Congratulations to Our 2007 Scholarship Recipients!

Transcription

1 SUMMER 2007 VOL. 25, NO. 3 Cogratulatios to Our 2007 Scholarship Recipiets! We are delighted to award eight scholarships to these outstadig youg adults with hydrocephalus. The scholarships were fuded by the Gerard Swartz Fudge Memorial Scholarship Fud, the Morris L. ad Rebecca Ziskid Memorial Scholarship Fud, the Athoy Abbee Scholarship Fud, the Justi Scot Alsto Memorial Scholarship Fud ad the ewly created Mario J. Tocco Hydrocephalus Foudatio Scholarship Fud. Our cogratulatios to the recipiets ad to all the impressive people who applied for this year s scholarships. To read about them, please tur to page 16. For a list of the fialists, go to page 19. Keith True St. Charles, Illiois Haylea Ly Blak Thomasville, North Carolia Bret Michael Meyers Chia Towship, Michiga Amada Shak Ithaca, New York Nicholas Alla Orriso Raleigh, North Carolia Natalie Geis Kaysville, Utah Daiel Hohma Spotswood, New Jersey Marcus Booth Flower Moud, Texas

2 Advocacy From the Board Presidet By Bob Jacobse I February I had the pleasure of attedig the Natioal Health Coucil s 20th Volutary Health Leadership Coferece. The groups i attedace icluded the America Cacer Society, the America Heart Associatio, the Spia Bifida Associatio, the America Diabetes Associatio ad, for the first time, our ow Hydrocephalus Associatio. It was a powerful experiece to joi our voice with those of other oprofit advocacy groups ad to look at our commo issues, such as our atioal healthcare crisis, the eed for iovative research fudig models ad best practices i board growth ad developmet. The Natioal Health Coucil requires that its members meet 41 stadards of excellece i areas such as goverace, persoel policies, programs, fudraisig, fiace, accoutig ad reportig, ad evaluatio. It s a real testamet to the quality of the Associatio that we were accepted ito membership, ad I salute those who worked diligetly to make it possible. I came away from the meetig coviced that HA ca lear ad do far more with this group tha we could by ourselves. The Board of Directors cotiues to focus ad make progress o the Associatio s strategic priorities, icludig core services, expasio, fud developmet ad advocacy. Our goal remais to make sure that everyoe dealig with hydrocephalus receives support, educatio ad ogoig quality care. That s a eormous challege, ad I wat to persoally thak all of our members, staff ad my fellow Board members for their cotiuig cotributios to this cause. I this issue of the ewsletter, you ll be readig about efforts toward a hydrocephalus documetary ad progress toward trasitio of care. With your help, we are succeedig. Fially, speakig of cotributios, I wat to cogratulate Board members Ray Moser ad Jim Kraz, who just successfully ad safely completed the 2007 Caoball Oe Lap of America race, with the Hydrocephalus Associatio as their charity. Thak you for your dedicatio, focus ad leadership! Coferece Remider Photo by Ala Miller The Cayos Resort i Park City, Utah, is ready to take your reservatios for our 2008 coferece. Call ad ask for the Hydrocephalus Associatio Coferece rate for Jue 19 22, The Cayos cosists of two properties across a courtyard from each other i the beautiful Wasatch Moutais outside of Salt Lake City. The Grad Summit Hotel starts at $139 for a sigle or double room; the Sudial Lodge is more familyorieted, with kitcheettes, shared washer/dryers ad rooms startig at $109. A storytellig performace by the icomparable Sherma Alexie A godola ride to a dessert receptio at mid-moutai A family-friedly resort with a pool Our first-ever Kids Camp for childre ages 3 to 12 Book your 2008 coferece accommodatios ow! The Cayos Little Advetures Childre s Ceter will have a Kids Camp for our coferece participats; the camp rus from Friday through Suday, is available at a 5 percet discout ad ca accommodate up to 50 childre ages 3 to 12. Pre-registratio is required two moths prior to arrival. The 2008 cost is ot yet fialized, but 2007 pricig is $62 per day, icludig two sacks ad luch. The earlier you book, the easier it will be for us to pla a appropriate curriculum for these lucky kids! If your child has special eeds ad you would like our help workig with the Childre s Ceter to maage this appropriately, please let us kow. To get a feel for the activities possible at Kids Camp, or for more iformatio about either property, check out The Cayos website at Park City is a fu moutai tow with shops ad restaurats, ad Utah has lots of beautiful atioal parks. Come early or pla to stay afterward ad ejoy the bouty. The 10th Natioal Coferece o Hydrocephalus: It s About Life! Be there! Hydrocephalus Associatio Newsletter Summer 2007

3 Advocacy Hydrocephalus Is Goig to Hollywood By Lori Poliski Photo by Rob Casey The Associatio is thrilled to aouce our collaboratio with oted filmmaker, poet ad author Sherma Alexie. Those of you who were lucky eough to hear Alexie speak at the HA atioal coferece i Chicago i 2002 or i Sa Fracisco i 2004 will remember his egagig style of storytellig, full of wit, pathos ad humor. Imagie a weavig of stories, icludig Sherma s ow, about livig with hydrocephalus, treatig hydrocephalus ad furtherig hydrocephalus research that creates a atioal buzz, makes hydrocephalus a household word, galvaizes cogressioal actio, ad drives more research fudig. A ew documetary film that achieves this is our goal. Alexie, a Spokae/Coeur d Alee Idia who was bor with hydrocephalus, is doatig his time, eergy ad passio to this productio, for which we are very grateful. The creative productio team of screewriter Alexie ad producer Larry Estes has a prove track record the team wo the two top popularly voted awards at the Sudace Film Festival i 1998 for Smoke Sigals, ad retured to Sudace i 2002 with co-producer Christy Cox with the world premiere of Alexie s directorial debut, The Busiess of Facydacig. We are so fortuate to be workig with this team! To read more about Sherma Alexie, Larry Estes ad Christy Cox go to We are aimig for the feature-legth movie to be completed by mid-september, i time to be submitted for the 2008 Sudace Film Festival ad other highprofile film festivals. Productio bega this past February i Africa ad Detroit ad will cotiue through the summer. The story weaves together the lives of both childre ad adults with hydrocephalus ad ceters aroud the sufferig ad frustratio iheret i livig with this lifelog eurological coditio ad the hope offered by brilliat, wise, dedicated researchers who could beefit from much-eeded but scarce support. Dory Kraz, the executive director of HA, is co-producig the film alog with me. We are excited about this documetary s potetial to raise awareess about hydrocephalus o a iteratioal level usig artistry, humor ad poigacy, says Kraz. Not oly do we wish to be recogized at film festivals aroud the world, but we have high hopes for distributio i theaters ad o major televisio outlets like HBO ad PBS, she adds. We are cotiuig the process of raisig moey to fiace the documetary as we go, ad we greatly eed your help to complete this project, distribute ad market it. It s our uderstadig that it will cost at least $125,000 to make the film. If you are ispired by this idea, we would be grateful for your cotributio, however great or small. Every dollar raised will help us brig this visio to fruitio. Also, if ayoe has film idustry coectios that could help to icrease the documetary s visibility, please me at lpoliski@hydroresearch.org. Stayed tued for updates! Lori Poliski is a HA member, presidet of the Seattle Childre s Hospital Hydrocephalus Research Guild ad a paret of a child with post-ivh hydrocephalus. Hydrocephalus Advocacy Ispires Citizeship Shortly after meetig with members of Cogress as part of the Hydrocephalus Associatio s Advocacy Day i 2006, Paula Keyser realized it was time to apply for aturalizatio so that she could become a America citize ad vote o issues of importace. As she says, It is such a humblig experiece to accompay your family to our atio s capitol ad realize that most of the represetatives there have ever eve heard the word hydrocephalus ad uless you re a costituet, your word does t hold much weight. We have so much work to do to get the word out about this coditio ad fid a cure. Every voice couts, ad I wat mie to be oe of them! Paula s citizeship applicatio process bega i Jue 2006, ad o April 26, 2007, Paula was officially swor i ad give her certificate of aturalizatio at a ceremoy at the Tampa Covetio Ceter. The first thig I m goig to do is register to vote, so that I ca talk to these legislators as a costituet ad educate them o hydrocephalus ad the issues that surroud childre ad healthcare today, she says. With her husbad, Mark, Paula leads the HA Tampa Bay affiliate orgaizatio, which is part of the affiliate pilot program we lauched this sprig. Cogratulatios o two big firsts, Paula, ad welcome to citizeship. We are very proud of you! Hydrocephalus Associatio Newsletter Summer 2007

4 Advocacy Raisig the Profile of Trasitio of Care By Pip Marks ad Dory Kraz Thaks i large part to Dr. Harold Rekate ad Dr. Joseph Piatt, two Hydrocephalus Associatio Medical Advisory Board (HA MAB) members, awareess about the trasitio from pediatric to adult-cetered care is beig raised withi importat professioal medical societies. It is with gratitude, delight ad hope that we share with you recet attetio by the America Associatio of Neurological Surgeos (AANS), the Pediatric Sectio of the AANS ad Cogress of Neurological Surgeos, ad the America Academy of Pediatrics (AAP) as they take up the cause of addressig trasitio cocers with us. These orgaizatios are large ad do t ted to move quickly; it may be a while for these efforts to bear fruit. We ca, however, celebrate their efforts. Trasitio to adult care settigs is a critical challege to members of the Hydrocephalus Associatio, may of whom have already or will soo be forced to trasitio out of their pediatric care settig ad fid adult-cetered care. The issue of trasitio of care is ot specific to hydrocephalus, but is shared by may coditios ad diseases that are medically or surgically treated i childhood, icludig spia bifida, cerebral palsy, syrigomyelia ad cogeital heart malformatios. The medical commuity performs lifesavig itervetios i childhood that allow people to grow ito adulthood; however, they have chroic pre-existig coditios that make them virtually uisurable ad a mystery to those who were traied i adult medicie durig a time whe there were ot yet adults with these coditios. It is a frotier that is i great eed of wise leadership ad positive chage. The AAP s 2002 Cosesus Statemet o Health Care Trasitio for Youg Adults with Special Care Needs ispired ad iformed HA s Health-Care Trasitio Guide for Tees ad Youg Dr. Hal Rekate used this map of the diaspora (a scatterig of people from their acestral home) created by Hurricae Katria i his Matso Lecture at the AANS to suggest how childre are scattered from their pediatric eurosurgery home whe they become adults. Adults, which was published i I our Trasitio Guide, we focus o helpig families ad tees begiig years before agig out of pediatric care to work with potetial providers of adult healthcare ad put trasitio plas i place. But eve with the best plas, adequate care is ofte ot available or accessible withi our curret healthcare system for adults with complex, chroic medical coditios from childhood. I 2004, pediatric eurosurgeo Dr. Adrew Paret wrote a article for Pediatric Short Cuts, a publicatio of the Pediatric Sectio, titled What Happes Whe Our Patiets Grow Up? Takig o the Tough Topic of Trasitioal Care. I this article (reprited i the HA Sprig 2005 ewsletter), Dr. Paret boldly states that all eurosurgeos must address the issue ad ackowledge the impedimets to appropriate trasitioal care for their patiets before they ca resolve the problem which they must do for the good of their patiets ad the larger medical commuity. I 2005, at a meetig of the HA MAB, Debby Buffa member of the HA Board of Directors ad mother of two daughters with hydrocephalus who are i the trasitio process preseted a heartfelt letter regardig the issues of trasitioal care for youg adults with hydrocephalus. A legthy dialogue esued amog the HA MAB members, ad the topic was embraced as oe of importace for our Associatio to cotiue to address ad for our HA MAB members to raise i other veues. I Jauary of 2006, Dr. Piatt proposed to the AAP Aual Leadership Forum (ALF) that trasitio to adult care settigs for childre with chroic medical ad surgical coditios be made a top priority. The ALF is the AAP s political, operatioal ad strategic plaig meetig, where resolutios are adopted ad prioritized for recommedatio to the board of directors. Dr. Piatt was a eloquet advocate: Oly the AAP ca address systematic issues such as the beefit policies of CMS ad other payors, the regulatios of social service orgaiza- Hydrocephalus Associatio Newsletter Summer 2007

5 Advocacy tios, the structures of physicia practices, ad the traiig of medical ad surgical subspecialists. If the AAP does ot take owership of this issue, o oe else will. The resolutio passed with oly supportive testimoy from the floor, ad ultimately it squeaked ito the top 10 priorities. These resolutios are ot bidig o the AAP board, which still eeds to decide where to put its resources ad how quickly to act. With Dr. Piatt s guidace, the Associatio worked with the Natioal Health Coucil, the Natioal Orgaizatio for Rare Disorders, the Spia Bifida Associatio ad other coditio-specific advocacy groups with whom we share a stake i this issue to sed a orchestrated message of support to the AAP. May letters were set to Dr. Jay Berkelhamer, Presidet of the AAP board, ecouragig actio o this priority. The Hydrocephalus Associatio will have a exhibit booth at the 2007 AAP aual meetig i Sa Fracisco to show our support ad keep this issue of trasitio i the limelight. Dr. Piatt wars, Eve if the board does covee a task force, ad eve if the task force s recommedatios are adopted, this process will yield beefits for our patiets oly over a very log timelie. Problems particular to eurosurgery, such as how to provide services for 30-year-olds with hydrocephalus, are ot likely to receive focused attetio. So this iitiative complemets but does ot compete with efforts withi our ow subspecialty, as keyoted recetly by Hal Rekate at the December meetig, to solve our ow cotiuity-of-care problems. As Dr. Piatt metios, aother HA MAB member, Dr. Harold Rekate, has bee workig diligetly withi the Pediatric Sectio of the AANS/CNS. I December 2006, Dr. Rekate coveed a affiity group at the Pediatric Sectio meetig that drew at least 100 people. The attedees explicitly recogized the issue s importace, ad shared examples of problems ad solutios. Those assembled realized that we do t yet have the aswer, ad that ay oe solutio is ot likely to work i all medical istitutios or states; a group is formig uder Dr. Rekate s leadership for further exploratio. Keepig this issue at the forefrot, Dr. Rekate chose it as his topic for the prestigious Matso Lecture at the April 2007 aual meetig of the full AANS: A Cotemporary Diaspora The Role of the Neurosurgeo i the Trasitio of Care for Pediatric Neurosurgical Patiets. Showig a picture of the far-flug migratio patter of those displaced by Hurricae Katria, he compared diaspora the migratio ad scatterig of peoples from their acestral homes to youg adults with hydrocephalus havig to leave their pediatric hospital homes. Dr. Rekate talked about the cocer of too may pitchers ad ot eough catchers, referrig to the umber of pediatric eurosurgeos passig o their kids to too few adult eurosurgeos who are willig ad qualified to take care of them. He proposed redefiig the Pediatric Sectio as a Joit Sectio o Pediatric ad Cogeital Care, which would address surgically relevat cogeital disorders ad support those who commit to their care throughout life. I additio, he proposed buildig bridges with med-peds practitioers who have had two years of pediatric specialty traiig ad two years of iteral medicie ad are board eligible i both. Med-peds practices that aim to provide cotiuity of care for childre who have bee treated sice ifacy are beig developed across the coutry, icludig i Phoeix, uder the leadership of Dr. Rekate; i Clevelad, uder the leadership of Dr. Mark Luciao; i Jacksoville, uder the leadership of Dr. Hector James; ad i Salt Lake City, uder the leadership of Dr. Mario L. (Jack) Walker ad Dr. Joh Kestle. As a recet member of the Natioal Health Coucil ad logtime member of the Natioal Orgaizatio for Rare Disorders, it is rewardig for HA to be workig together with orgaizatios advocatig for our brother ad sister coditios, as well as with members of our Medical Advisory Board, to create systemic healthcare chage that will beefit us all. Our Health-Care Trasitio Guide is for tees, youg adults ad their families. It is a importat tool to help them i uderstadig ad implemetig the trasitio to adultcetered medical care. The booklet is free to members. PDF copies are available via . Please or call us for a copy at ifo@ hydroassoc.org or Dr. Rekate writes i the Guide: The follow-up of patiets with hydrocephalus is the resposibility if the eurosurgeo. What is importat is that whoever performs the evaluatio should be thoroughly schooled i the evaluatio of shut-depedet patiets, be willig to let the patiet ad the patiet s family speak about potetial problems, uderstad the eed for a rapid respose ad be able to coverse with the treatig eurosurgeo immediately ad frequetly about problems that have bee idetified. Hydrocephalus Associatio Newsletter Summer 2007

6 Support NIH Grat Awarded to Dr. Bergseider for Hydrocephalus Research By Debra Howell We are excited to report that Dr. Marvi Bergseider, Director of the UCLA Adult Hydrocephalus Ceter ad a member of our Medical Advisory Board, has bee awarded a $1 millio grat from the Natioal Istitutes of Health (NIH). His study has two mai purposes: to better uderstad the sigificace of CSF flow as it udergoes pulsatio i hydrocephalus, ad assess whether edoscopic third vetriculostomy (ETV) is a effective treatmet for hydrocephalus. A mai thrust of the study is to collect physiological data to help i uderstadig the sigificace of pulsatile CSF flow i relatio to ormal itracraial dyamics ad itracraial dyamics i the cotext of hydrocephalus. I doig this, researchers will look at whether there is evidece to support the hypothesis that cerebral blood flow is depedet upo the pulsatile movemet of CSF, which occurs i respose to the likewise pulsatile ature of blood flow i the arteries. Oe of the questios to be aswered is: If there is a obstructio to CSF movemet, which is the hallmark of hydrocephalus, does this affect blood flow to the brai? There has bee icreasig iterest i pulsatile CSF flow, icludig Dr. Michael Egor s tued oscillator theory, which suggests that the rhythm of itracraial pressure (ICP) waves is tued to the rhythm of the heartbeat, so that CSF leaves the craium ad flows ito the spial area as arterial blood flows ito the craium with every heartbeat, ad returs whe the blood leaves the craium with every pulse. Measuremets to be used iclude cotiuously recorded waveforms of ICP, middle cerebral artery velocity (usig trascraial Doppler) ad peripheral blood pressure. I additio, patiets will udergo MRI studies to determie waveforms of CSF flow at various locatios, arterial blood flow i the carotid ad vertebral arteries, ad outflow i the veis. A electrocardiogram will be recorded ad used as the timig referece poit to determie the exact timig of CSF, blood ad tissue movemet withi the craium. These measuremets will be obtaied before ad after surgery for hydrocephalus patiets, ad i healthy adult subjects to obtai cotrol-group data. Researchers will use this iformatio to model CSF movemet i relatio to pulsatile blood flow. The secod specific aim is to assess the efficacy of ETV i the treatmet of hydrocephalus, primarily i commuicatig hydrocephalus. The study will be a prospective cliical study comparig a VP shut to ETV. I additio to lookig at success ad complicatio rates, researchers will use the iformatio gathered about CSF ad blood flow movemet, as described above, to determie predictive physiological variables for treatmet success. Dr. Bergseider ad his research team hope that at the ed of the study, they will be able to tell ay give patiet whether he or she will respod to ETV. Study participats will be adult patiets with hydrocephalus, icludig ormal pressure hydrocephalus (NPH) patiets. Participats ca come from aywhere i the Uited States. We cogratulate Dr. Bergseider for his NIH grat, ad thak him for his extesive kowledge ad steadfast dedicatio to hydrocephalus research ad treatmet. Resources ad Readig for Older Adults ad Caregivers Compiled by Debra Howell If you are a older adult or care for someoe who is, keep readig for some useful ad iterestig health-related resources. NIHSeiorHealth.gov NIHSeiorHealth.gov has bee desiged with seiors i mid. The site is based o the latest research o cogitio ad agig, featurig short, easy-to-read segmets that are accessible i a variety of forms, icludig large-prit ad audio. It also liks to MedliePlus, which has more detailed cosumer health iformatio. For more iformatio, visit www. ihseiorhealth.gov. Cosumer s Tool Kit for Health Care Advace Plaig Good advace plaig for healthcare decisios is, i reality, a cotiuig coversatio about values, priorities, the meaig of oe s life ad quality of life. To help you i this process, the Cosumer s Tool Kit for Health Care Advace Plaig cotais a variety of self-help worksheets, suggestios ad resources. The tool kit does ot create a formal advace directive for you. Istead, it helps you do the much harder job of discoverig, clarifyig ad commuicatig what is importat to you i the face of serious illess. To access the tool kit, visit www. abaet.org/agig. Medicare Iteractive ad Medicare Rights Ceter The Medicare Iteractive (MI) website is desiged to help older adults ad caregivers escape the healthcare maze ad get eeded care. The site is comprehesive ad easy to avigate. Sectios iclude MI Couselor, which aswers questios Hydrocephalus Associatio Newsletter Summer 2007

7 Support about healthcare beefits ad optios, ad how to access health beefits; MI Commuity, where people share their stories ad lear from others; MI Local Services, where users ca fid commuity services i their area; ad MI Uiversity, which covers the is ad outs of Medicare via iteractive multimedia lessos. MI was desiged by the Medicare Rights Ceter (MRC), the largest idepedet source of healthcare iformatio ad assistace i the Uited States for people with Medicare. Sice its foudig i 1989, MRC has bee helpig older ad disabled Americas, their caregivers ad the professioals who serve them uderstad their healthcare rights ad beefits so that they get the healthcare to which they are etitled. MRC works o three frots: providig direct services to idividuals who eed aswers to Medicare questios or help securig coverage ad gettig the healthcare they eed; educatig cosumers, icludig caregivers ad the professioal couselors, about healthcare beefits ad rights; ad advocatig for policy chages that will beefit all people with Medicare. Visit Medicare Iteractive at www. medicareiteractive.org ad Medicare Rights Ceter at org. New Log-Term Care Plaig Website The Natioal Clearighouse for Log- Term Care Iformatio has a ew website that provides comprehesive iformatio about log-term care plaig, services ad fiacig optios, alog with tools to help people begi the plaig process. The site is a project of the Health ad Huma Services Admiistratio o Agig, Ceters for Medicare ad Medicaid Services ad the Assistat Secretary for Plaig ad Evaluatio; it s desiged to icrease public awareess about the risks ad costs of log-term care ad the potetial eed for services, ad to provide objective iformatio to help people pla for the future. The website also supports the Ow Your Future educatio campaig, a joit federal ad state iitiative desiged to icrease cosumer awareess about plaig for log-term care. For more iformatio, visit www. logtermcare.gov. Traiig Videos for Family Caregivers Healig Arts Commuicatio, a compay that produces iformatioal ad traiig videos ad DVDs o caregivig ad other log-term care topics, has added ew programs to its collectio. The series focuses o topics such as measurig vital sigs, maagig medicatios, helpig someoe use a wheelchair, persoal care ad caregiver welless. For more iformatio, visit The America Bar Associatio Legal Guide for Americas Over 50 A updated legal guide for baby boomers ad their parets, edorsed by the America Bar Associatio Commissio o Law ad Agig, is ow available. The book cotais ew chapters o elder abuse, fiacial plaig for icapacity, advace plaig for healthcare decisios, ad marriage ad divorce. It also cotais iformatio o Social Security, Medicare, Medicaid ad other govermet programs. The guide ca be ordered from the ABA at agig or from Amazo.com. Heart Wide Ope Self-Care for Caregivers By Sadi Kimmel ad Patrick Murphy This booklet helps caregivers of people with ay illess to maage the feeligs associated with beig a caregiver. It icludes chapters o eatig chocolate ad playig importat thigs to remember to do whe carig for someoe else! To order, cotact Sterlig Heart Publishig at or order olie at www. sterligheart.com. Self-Care ad Support for Family Caregivers The Natioal Cacer Istitute has created three publicatios for caregivers, focusig o family caregivers eeds for iformatio ad support. While the booklets are writte for families ad frieds of cacer patiets, the iformatio is applicable to ayoe carig for someoe over the log term. For more iformatio, visit Whe-Someoe-You-Love-Is-Treated. Hydrocephalus Database Registry Update The data that we have collected through the Associatio s Hydrocephalus Database Registry cotiues to yield results. A team of researchers ad cliicias at the Uiversity of Califoria at Sa Fracisco used the data to write Log-Term Outcomes i Patiets with Treated Childhood Hydrocephalus, which was published i the May 2007 issue of the peer-reviewed Joural of Neurosurgery: Pediatrics. Cogratulatios ad may thaks to the team at UCSF: Nali Gupta, MD, PhD; Jeaa Park, BA; Margaret Wresch, PhD; ad Yvoe Wu, MD, MPH. Our cotiuig gratitude also to Associatio co-fouder ad past board member Cythia Solomo for her visio ad hard work i desigig ad creatig the database registry. Oe key fidig of the paper was o surprise: Shut complicatios are commo; 54 percet of patiets had four or more shut revisios ad 9 percet had three or more shut ifectios. A free dowloadable copy of the article ca be foud o the Joural of Neurosurgery: Pediatrics website: peds/issues/v1065/pdf/p pdf. If you have t etered your iformatio ito the database, log o ad be couted! Fill out our survey electroically o the secure, HIPAA-compliat site www. hydrocephalusdatabase.org, or request a paper copy from the HA office. This data is critically helpful, because documetatio of usatisfactory log-term outcomes ad complicatios i curret diagosis ad treatmet is importat to makig our case for more federal support of hydrocephalus research. Make your voice heard i our collective call for chage. Hydrocephalus Associatio Newsletter Summer

8 Advocacy Advocacy Update Natioal Advocacy Help stregthe our case for appropriatios report laguage ad lay the groudwork for future advocacy efforts by gettig to kow your legislators ad educatig them about hydrocephalus through your persoal story. Oe of the best times to meet with legislators is durig district work periods, whe they are at their home office. The summer district work period is August 6 31, Cotact our atioal advocacy director, MaryBeth Godlewski, for assistace makig a appoitmet; talkig poits, brochures ad other materials to take with you; ad iformatio about importat committee assigmets. You ca reach her at marybeth@hydroassoc.org or We have champios i the House ad Seate proposig hydrocephalus report laguage i the FY 2008 appropriatios bills (read more about this i MaryBeth s profile o page 10). At least 35 people have respoded to our advocacy alert ad set persoal writte testimoy i support of this budget laguage to the chair ad rakig member of the U.S. House ad Seate Appropriatios Committees this sprig. Wo t you do your part over the summer? Do t put your legislators o a pedestal get to kow them as people ad ask for their help. State-Level Advocacy Ispired ad iformed by MaryBeth Godlewski ad Kelly Rambo s success i havig November declared Hydrocephalus Awareess Moth i Pesylvaia last year, Shao Christia tells her story of legislative success i Colorado: Oe of the most difficult aspects of havig a child with hydrocephalus is feelig helpless ad powerless. At the same time, I wat to make a sigificat differece i the life of my 2-year-old so, Reece. I recetly foud a easy yet very powerful way of helpig Reece ad all of the idividuals i Colorado who have hydrocephalus. I cotacted my state seator ad asked that she sposor a resolutio declarig September Hydrocephalus Awareess Moth. However, before I ever started dow this path, I eeded to be coviced that it was worth my time. For oe, I did t kow who represeted me i the state seate, so I did t kow whom to cotact. Furthermore, I have o backgroud i politics or the legislative process. I m ashamed to admit it, but I usually do t eve vote for local cadidates; it takes Shao ad Reece Christia with Colorado State Seator Spece too much time to sort through all the cadidates ad what they stad for. After beig reassured ad ecouraged by MaryBeth Godlewski, I tracked dow a address for my state seator. I ed Seator Nacy Spece about Reece, his coditio ad my desire to have her sposor a resolutio. I decided I could always throw i the towel if it became too difficult. I set my to Seator Spece o a Wedesday afteroo; that eveig I had a respose from her askig if I could brig Reece to her office the followig week. By the ed of our meetig, Seator Spece was more educated about hydrocephalus, ad she had made a commitmet to sposorig a resolutio. She followed up by faxig me workig drafts of the resolutio, askig whom I wated to sed copies of the resolutio to ad ivitig me to be her guest whe the resolutio was itroduced. Whe the resolutio was itroduced i the state legislature six weeks later, my seator ad represetative ackowledged me ad Reece ad publicly asked that the resolutio be read aloud. I received a stadig ovatio ad was thaked by may legislators for takig the time to travel to the state capital. I was awestruck by how simple it was to achieve somethig so sigificat, ad how willig my state seator was to help me. She did t expect me to be a legislator; she merely wated to kow about hydrocephalus ad about my child. I simply had to talk about Reece ad about his coditio, two areas i which I am a expert like o oe else. Seator Spece was happy to ivolve me, ad I wated to be ivolved but I also kow that had I chose ot to go to the state capital, I could have easily commuicated the ecessary iformatio about Reece ad his coditio over the phoe or via . The Hydrocephalus Associatio was fully supportive ad available to me whe I had questios, ad it was easy to get the iformatio I eeded to make the resolutio a reality. The most gratifyig aspect of havig September declared Hydrocephalus Awareess Moth i Colorado is that it hoors Reece ad all the other Coloradas who have hydrocephalus. My hope is that evetually every state will have a Hydrocephalus Awareess Moth to recogize those who have the coditio ad are so deservig of greater uderstadig. I my mid, this simple yet powerful act of havig a statewide resolutio is ot oly empowerig, but is a steppig stoe i the greater goal of securig more fudig, better treatmet ad, my hope of all hope, a cure for hydrocephalus. Similar efforts are uder way i other states. Will your state be ext? Mary- Beth says, Do t stop with a resolutio or a awareess moth; ivite a legislator, mayor or goveror to chair or speak at a TEAM evet i your state. Hydrocephalus Associatio Newsletter Summer 2007

9 Educatio Tellig the Teacher: What I Wat My Child s Classroom Teacher to Kow Adapted by Pip Marks from a article by Patricia Bill that appeared i Pacesetter, fall Used with permissio from Pacer Ceter. Most childre with disabilities are icluded i the regular classroom for part of their day, yet may geeral classroom teachers say that sometimes they feel uprepared ad ucertai about how to work with studets who have special eeds. May add that they would welcome help. We parets uderstad that teachers are icredibly busy with large umbers of studets, lack of resources ad other challeges, says Beth Davis, a mother of two teeagers with disabilities. I ve always ecouraged both of my childre s teachers yes, eve all the oes i high school to cotact me if I ca help them uderstad aythig at all about either oe of my childre. Like Davis, may parets of childre with disabilities are willig to help teachers ad others at school to work with their child. However, some families do t offer help or suggestios, either because they believe that the teacher must kow best or they do t wat to appear critical of the teacher. I the spirit of paret-school parterships, you may wish to share the followig ideas at your child s school. My child is a perso Greetig my child by ame whe he comes to class ca make a huge differece i his day. Developig a relatioship with him establishes his existece. You set the stage for how others at school treat him. Like ay child, mie is uique. She has passios, dislikes, thigs she is good at, thigs she is ot. Your efforts to lear about her iterests ad stregths validate her. My so s idetity is more tha a diagosis or a label o a IEP. The disability is oly part of who he is. Please look beyod it to see more of him. Uderstadig the disability may affect how you perceive my daughter. I am happy to give you iformatio or help you fid it. Please be discreet. What you say about my so good or bad, i the teacher s louge or elsewhere affects his reputatio, as well as your ow. We ca talk I gladly will share ideas ad thoughts as well as cocers about my child. If you cotact me, I ca probably offer isight ito her behavior ad share strategies that work at home. My so may look like a typical 12- year-old, but his disability is real. Our family worked with professioals through a log ad sometimes paiful process to reach a diagosis for him. If you ackowledge that my so has a disability, we ca commuicate opely about how to address it. The oly way my daughter ca succeed at school is through our partership. I kow that you are a professioal, but I am a expert whe it comes to my child, ad I will be part of her life forever. My child ca lear You ca relax. I do t expect miracles, but I hope you will have high expectatios for my so. I assume he ca do a certai task util he proves otherwise. If we work together, our expectatios for him likely will be realistic. Arragig groups ad teams to iclude everyoe will help my daughter feel that she belogs to the class ad the school commuity. She lears from her peers. My child s experieces i your classroom are the foudatio of his future success at school or i employmet. Ecouragemet is crucial for him to keep tryig. My daughter may ot be able to express herself i customary ways, but she beefits from beig i your class. She gais kowledge, eve if she is slow at a task, scores low o tests or does ot respod at all. Her IEP, which you have received, tells what accommodatios she eeds i order to progress. My child probably ca develop his abilities if we ecourage him. It may be easy to coddle him, but together we eed to help him fly o his ow. Try usig code words or discreet sigals to guide my daughter. Callig out her ame i class for what her disability will ot allow her to do ( Mary, sit dow, Mary, be quiet or Mary, hurry up ) brigs egative attetio ad affects her self-esteem. My child has gifts Childre with all types of disabilities ca offer much to others. If you look for it, my child ca cotribute somethig valuable to the classroom that o oe else ca. Above all, I hope you ca fid somethig to geuiely like about my child. I kow you will. NOTE: The Teacher s Guide, published by the Hydrocephalus Associatio, is a excellet resource ad referece tool for your child s teachers. I the sprig issue of the ewsletter, Pip Marks ad Deborah Phillips preseted tips o how to use the Guide. A copy of the Guide is available free to our members. Additioal copies cost $3. To request a copy, call the office ( ) or sed a to ifo@hydroassoc.org. Hydrocephalus Associatio Newsletter Summer 2007

10 Associatio News We Welcome MaryBeth Godlewski to the Associatio Staff MaryBeth Godlewski, our ew atioal advocacy director, has a ageda: to fid a cure for hydrocephalus before her daughter, Emma, has aother shut malfuctio. Emma, ow 10, has udergoe 35 brai ad skull surgeries, 28 of which were shut revisios. As a HA member, a advocate ad ow as director of our advocacy efforts, MaryBeth holds a strog commitmet i faith that a cure will be foud. Lucky for us, she is puttig her creativity, passio ad drive behid that faith. A woma with a strog service ethic, MaryBeth co-chaired our first Pesylvaia TEAM walk-ru i November The evet was i hoor of a well-loved local eurosurgeo, Dr. Samuel Neff, who had died suddely. Through her orgaizig experiece, MaryBeth met other families affected by hydrocephalus ad saw the great eed for awareess, resources ad improved medical outcomes. Clearly, Emma s story was ot the oly heart-wrechig oe. Moved to become more ivolved, MaryBeth atteded the Associatio s Nith Natioal Coferece i Baltimore i 2006, with her family i tow. Her sese of the urgecy ad magitude of the eed for chage was expaded yet agai. A bor fixer, MaryBeth foud her mid racig with ideas of ways to create this chage. Advocacy Day 2006 was like a Idepedece Day for MaryBeth, freeig her from feelig itimidated by state ad atioal legislators, who had previously occupied a pedestal i her mid, ad poitig her o a path of actio. If you have ever met or spoke with MaryBeth, you might fid it hard to believe that she was ever itimidated by ayoe. But, i her words, Advocacy Day completely empowered me. I realized that legislators were t above me, ad that I have a right to approach ay legislator ad ask them to create chage for Emma ad for all people with hydrocephalus. Ad ow I do. We d like to share with you a story that illustrates MaryBeth s willigess ad ability ot oly to ask, but to move legislators to actio. Michael Smercoish is a radio talk show host ad political commetator who has a persoal relatioship with Seator Arle Specter (R-PA). His childre atted the same school as MaryBeth s, MaryBeth, her daughter Emma ad U.S. Seator Arle Specter givig them a commo iterest. From listeig to his show, MaryBeth leared that Smercoish likes tomato pie (a Philadelphia treat much like pizza without cheese). Oe day while his show was o the air, she brought a tomato pie to the radio statio as a gift. Smercoish came out of his studio every 20 miutes, durig commercial breaks, for aother piece of tomato pie. At the ed of his show, after the last piece of the pie was eate, he agreed to talk with Seator Specter about hydrocephalus. At MaryBeth s ivitatio, Smercoish s wife, Laviia, served as hoorary chair of the Secod Aual TEAM PA Hydrocephalus Walk-Ru, which icluded a pre-evet cocktail party. MaryBeth had faith that if his wife was preset, Michael would atted. At the party, MaryBeth itroduced HA s executive director ad a HA Board member to Michael ad his producer, ad the weight ad scope of her cause were stregtheed i their mids. Several weeks later, MaryBeth received a 5 a.m. that Seator Specter would be i Michael s studio that morig, givig her the opportuity to make her pitch i perso; durig a commercial break, she told Specter about HA s goals for icreased federal support of hydrocephalus research. Uable to say o to such a charmig youg lady, he agreed to help with our ext step: appropriatios. As a result of MaryBeth s coectios, commitmet ad passio, report laguage has bee itroduced ito the 2008 House ad Seate appropriatios bills. Whe Seator Specter called a press coferece o flat fudig for biomedical research shortly after itroducig our report laguage this sprig, MaryBeth ad Emma wet to Washigto, D.C., to reew their persoal coectio with Specter ad keep the cause of hydrocephalus alive i his mid ad heart. This story of oe perso s coectios ad ifectious ethusiasm recalls the words of Margaret Mead: Never doubt that a small group of thoughtful, committed citizes ca chage the world. Ideed, it is the oly thig that ever has. If you are ispired by MaryBeth s story ad wat to joi our bad of thoughtful, committed citizes actively advocatig for chage i the world of hydrocephalus, please cotact her at marybeth@ hydroassoc.org or Hydrocephalus Associatio Newsletter Summer 2007

11 Advocacy My Ru for Political Office By Laura Mick Last summer, the Machester City Democrats asked me to ru for state represetative for Ward Six i Machester, New Hampshire. I gave it a lot of thought durig the ext week. I had spet the previous years voluteerig for various local ad atioal campaigs all across the state. My healthcare story as a youg woma with a serious health coditio o high-deductible isurace had bee private, but ot tellig it had become paiful so I had chose to share it earlier that year, through the website of Americas for Health Care, a orgaizatio devoted to advocatig for affordable, accessible healthcare. All week, I thought about these excitig cosideratios, alog with fears of holdig dow a full-time job ad makig frequet trips to Cocord to serve my costituets if I eve wo. Ultimately, I accepted the Machester City Democrats omiatio. I the early morig o Jue 9, alog with a group of other Democratic ad Republica hopefuls, I registered my ame at city hall as it would appear o the ballot. Coicidetally, this took place oly oe week after I retured home from the Hydrocephalus Associatio coferece! My ivolvemet with Americas for Health Care bega with a simple postcard I got from their state group, New Hampshire for Health Care, as New Hampshire s presidetial primary was pickig up speed. The postcard gave iformatio o ways to help, ad I started to work with the orgaizatio. I have met dozes of icredible, like-mided people by gettig ivolved. I feel that it was oly atural to show my gratitude with voluteer hours ad support by spreadig the word about the campaig to reform our healthcare system. I do t wat ayoe to ever feel as aloe as I did whe the all the major isurace compaies deemed me ufit for idividual isurace. Everyoe eeds a productive way to vet emotio, ad I foud mie. My activism icluded goig to umerous evets wearig a purple New Hampshire for Health Care T-shirt the trademark of Health Care Voters across the Uited States. Health Care Voters are people who pledge their commitmet to fightig for improved healthcare. New Hampshire for Health Care set all Health Care Voters i Ward Six a copy of my healthcare story. They gave me permissio to go door-to-door with hudreds of copies for the rest of my costituets as well. What a feelig of exhilaratio that was! I lost by oly 36 votes i November, behid icredibly supportive icumbets (yes, o both sides of the aisle!). Our umbers were all withi the thousads somewhere. The experiece was amazig, ad it brought me closer to my defiitio of what womahood meas. It s ever about what the perso ext to you has accomplished, or what scale is beig used for the orm. It s about what I myself was able to accomplish. That s a excellet lesso for life after the electio, as well. I kew I took all the steps ecessary to wi as a relatively ukow cadidate, ad I left Electio Day up to the voters. I hope that all the future politicias readig this ca experiece just oce what door-to-door cavassig feels like. All the dead-ed coversatios I oce had with hospitals ad isurace compaies o loger mattered. Two days before Electio Day, I eve got icely scolded by oe of my costituet s mothers for cavassig i the dark. I graciously accepted her flashlight ad was o my way. The beefits of a idividual with hydrocephalus becomig politically ivolved are edless. Voluteerig with people from all walks of life, whether locally or atioally, is a life-chagig experiece. It s a time to exchage uique stories i our case, about hydrocephalus, a chroic ad multifaceted medical coditio. Campaig staffers are grateful for the help they receive; after all, a or- diary citize is gettig their cadidate s message out. Two ways that begiers ca start makig a differece withi the hydrocephalus commuity are familiarizig themselves with their seators ad assembly members views o healthcare issues, ad equally importat writig letters to the editors of ewspapers across the Uited States to shed light o what it s like to kow hydrocephalus persoally. I particular, we ca write to our represetatives requestig that they support our hydrocephalus report laguage i the 2008 appropriatios bill. Laura s story ca be foud at www. americasforhealthcare.org/health-carestory-of-the-week/2006/6/14/laura-mickmachester-ew-hampshire.html. New ICD-9 Code for NPH Thaks to the efforts of Hydrocephalus Associatio Medical Advisory Board member Michael A. Williams, MD, of Johs Hopkis Hospital i Baltimore, ormal pressure hydrocephalus (NPH) ow has its ow code i the Iteratioal Classificatio of Diseases (ICD- 9). The Ceters for Medicare ad Medicaid Services, which oversees the ICD, has aouced that a ew code for Idiopathic NPH, 331.5, will be available for use o October 1, This ew code will make the separatio of data about NPH from that about other forms of hydrocephalus easier ad more reliable. We owe Dr. Williams a debt of gratitude for figurig out how to make this happe, wadig through the formal process ad givig persoal testimoy. We also thak our other Medical Advisory Board members, ad the allies who supported this effort with letters ad faxes. Way to go, team! Hydrocephalus Associatio Newsletter Summer

12 Outreach What Is Oe Lap of America ad How Does It Relate to Hydrocephalus? By Jim Kraz Late last year, a fellow HA Board member, Ray Moser, asked me to joi him i the Oe Lap of America road rally to raise moey ad awareess for hydrocephalus. What is Oe Lap of America, you ask? O the surface, it s eight days of car racig at various tracks aroud the coutry, with seve ights of highway drivig betwee the evets, coverig 4,600 miles. It s a test of edurace ad reliability of both the vehicle ad the team. It s the mother of all road trips. It s a opportuity for you ad your best fried to lear to hate each other. It s brutal, yet gratifyig. It s a great way to stress out a perfectly good car. It s bee described i may ways, but i the ed, if you ve ever ru Oe Lap of America, you ll ever really kow what it s about. What happes if we take this descriptio ad chage it just a little bit? What is hydrocephalus, you ask? Well, o the surface, it s a lifelog challege, filled with the ukow. It s a test of edurace ad reliability of the perso with hydrocephalus, his or her family ad the medical team. It s the mother of all road trips. It s a opportuity for you ad your doctor to lear to get to kow each other ad at times hate each other. It s brutal, yet gratifyig. It s a great way to stress out a perfectly good brai. It s bee described i may ways, but i the ed, if you do t have hydrocephalus, you ll ever really kow what it s about. Durig my eight-day adveture, I had the opportuity to explai to umerous fellow racers, gas statio attedats, spectators, restaurat employees ad curious idividuals what hydrocephalus is ad what we were doig. May had ever heard of it. However, a couple of people said, Oh, yeah, I kow someoe with hydrocephalus. I was hearteed by the geerosity ad iterest of these idividuals. I also had the opportuity to see our commuity i actio. We were offered free places to stay, eve though we would Top: Oe Lap race car drivers Paul Heilma, Jim Kraz ad Ray Moser with their ispiratio, Jessica; bottom: racig fa Christopher Talbot takes a tur at the wheel. be arrivig i the middle of the ight; however, we chose to seek food istead of shelter. Our first support team arrived at the track i Tooele, Utah. They gave us sadwiches ad homemade cookies. Let me tell you, the cookies lasted less tha 100 miles! Our supporters also provided messeger service, ad whe oe of our competitors eeded parts for their car from a hour away, Ly ad Mickey loaed them their car. Collee drove me back to my hotel so I could retrieve my forgotte watch ad book. Christopher, a 8-year-old who has hydrocephalus, was excited to drive our race car ad have his picture take i the wiers circle. I Pueblo, Colorado, we were joied by Brad, a youg adult with hydrocephalus, o his birthday. Whe Brad foud us ad asked what he could do to help, we quickly placed a order for supplies ad luch. Before Brad could head out, we were joied by Adriaa, a youg lady with hydrocephalus, ad her family; they arrived with glitter sigs ad luch, complete with picic table ad tablecloth. Brad switched to dier duty ad ra out i the afteroo to brig us salads ad fruit. After eatig road food for days, this was oe of our fiest meals. The gag cheered us o ad, as competitors left the track, they held their glittery Hok for Hydrocephalus Awareess sig high up overhead. Ad the hors were blarig! We were also give may phoe umbers ad offers of support ad help alog our route. Fortuately our trip wet smoothly, ad we did t eed to call ay of our woderful commuity members i the middle of the ight askig for help. It sure was comfortig to kow that people were there for us almost everywhere we wet. I also had the very special privilege of brigig alog four prototype teddy bears with shuts. The Associatio is de- 12 Hydrocephalus Associatio Newsletter Summer 2007

13 Outreach velopig the bears as a teachig tool for doctors ad urses, ad as a way for childre with hydrocephalus to talk about it with family ad frieds. The bears have actual shuts ad ca be used to demostrate how a doctor iserts the shut ad draiage tubig uder the ski from the brai to the belly area. I gave away all four bears o the trip, three to childre with hydrocephalus ad oe to a child without hydrocephalus. I m happy to report that I ve heard from all four families, ad the results have bee amazig. All of the childre have show family members ad frieds the bear ad explaied how the shut is istalled. I some cases, the childre had ever spoke to ayoe about their hydrocephalus before. Not eve a week after the evet, I received a touchig letter from Christopher s mom that said, i part, Christopher is so smart; he sees all his differeces ad he felt very loely. He kew he was differet because of his medical issues. Now, with Hydro Bear, he is ot aloe aymore, because this little scruffy bear is just like him. Overall, we placed 72d out of 100 teams, ad had a great time. Our goal was to raise awareess ad $100,000. We ve already exceeded our awareess goals, ad expect future coverage i Car & Driver magazie ad o Coutry Music Televisio. We fell shy of our fiacial goals, but we re very pleased with the $30,000 we raised ad hope you will still cosider cotributig. I would like to thak our official car sposors for their support: Moser IP Law Group, Pappa Joh s Pizza, Global Locate, Walsh Beefits; Teradici Corporatio, The Wiery at Holy Cross Abbey; Edmods PC Itellectual Property Attoreys; Codma, a Johso & Johso Compay; ad Medtroic Neurologic Techology. Kid s Corer! By Boie Hom Please fid the 20 words listed i the grid. All the words ca be foud readig across (left to right) or dow (top to bottom). Some letters will be shared amog words so you will see overlap. There are also words i the grid that are ot listed. You may wat to challege yourself ad see how may words you ca fid. Ejoy! (The aswers are o page 21.) P.S. If you have ay commets or suggestios about this Kids Corer or past oes, please boie@hydroassoc.org. Word Search Catheter A A C B I E D U C A T I O N Disability P D T R N V T T O R T E A S Research Diagosis I V A A F E R S E P P O U D Pressure B O N I E N E R M R C N L I Isurace Ifectio C C E N C T A R C O O L T A Support A A U S T R T L N G M A R G TVetricles I O N Programmable T C E U I I M M A R P S A N H Y D R O C E P H A L U S O E U N A N L N O L M I P O S I Brai C T Complicatio T L I N K E T N O M C P U I Shut E S A C I S N F L A A O N S Ultrasoud Advocacy R E S E A R C H N B T R D H Treatmet R O A D I S A B I L I T Y U Lik E T P R E S S U R E O T T N O B S T R U C T I O N I C T Hydrocephalus Obstructio Educatio Hydrocephalus Associatio Newsletter Summer

14 TEAM TEAM Hydrocephalus 2007 Walkathos: Gettig Bigger, Growig Stroger The list is amazig! Our TEAM Hydrocephalus Walkathos are gettig bigger ad growig stroger. These evets provide great opportuities to promote hydrocephalus awareess, brig together a local hydrocephalus commuity for support ad raise fuds to help all those affected by hydrocephalus. For additioal ad up-to-date iformatio o these TEAM evets ad more, be sure to check out our website at You ll be able to register for evets, doate to evets ad lear how to start your ow evet. TEAMs are hosted by woderful voluteers who geerously put their time, commitmet ad determiatio ito ruig these outstadig evets. We truly thak them for all of their hard work. Please come ad show your support if a evet is plaed i your geographic area. Ad go TEAM! Curret TEAM Hydrocephalus 2007 Walkathos: Albuquerque, NM October 20, 2007 Village of Los Rachos Park Cotact: Kathy, (505) , kdlc@etzero.et; or Marie, (505) plaedreami@hotmail.com Atlata, GA September 23, 2007 Alpharetta Recreatio & Parks Cotact: Keith ad Kerry teamatlataga@yahoo.com Austi/SaAtoio, TX October 6, 2007 Lada Park i New Braufels Cotact: Sheri texashydrowalk@wmcoect.com Chicago, IL To Be Aouced Cotact: Sherry, (708) , walkchicago@sbcglobal.et Clevelad, OH August 5, 2007 Clevelad Metroparks Zoo Cotact: Hilary, (440) , hkr0927@aol.com Dever, CO September 9, 2007 Northridge Park i Highlad Rach Cotact: Phyllis, (303) , hydropr2@comcast.et Detroit, MI September 12, 2007 Kesigto Metropark i Milford Cotact: Deise, (732) , suzychapstick128@aol.com Ediso, NJ September 9, 2007 Roosevelt Park Cotact: Kim, (732) , kai0424@aol.com Greesboro/Durham, NC September 22, 2007 Graham Middle School, Goley St. Field Cotact: April, (336) , abratley25@triad.rr.com Housto, TX To Be Aouced Cotact: Mary, houstohydro@yahoo.com Iteratioal Falls, MN To Be Aouced Cotact: Sherry, (218) , ocurse72@hotmail.com Log Islad, NY To Be Aouced Cotact: Jaie ad Doris teamhydrocephalusliy@yahoo.com Louisville, KY October 6, 2007 Otter Creek Park i Bradeburg Cotact: Elizabeth, (502) , Philadelphia, PA November 4, 2007 Norristow Farm Park Cotact: Kelly, (610) , Keli693@aol.com; or Erica, (215) , divacator5@yahoo.com Providece, RI To Be Aouced Cotact: Joa, (401) , momoftriplets@cox.et Sacrameto Valley, CA September 22, 2007 Feather River Recreatio & Park District i Oroville Cotact: Jodi, (530) Salt Lake City, UT September 22, 2007 Sugar House Park Cotact: Vicki ad Kelly, (801) , teamhydro.slc@gmail.com Sa Fracisco, CA September 23, 2007 Crissy Field/The Maria Cotact: Pip, (415) , pip@hydroassoc.org St. Louis, MO September 30, 2007 Creve Coeur Park Cotact: Abby, (636) , puckett4@sbcglobal.et Tampa Bay, FL September 2, 2007 Largo Cetral Park Cotact: Paula, (727) , hydrosupport@gmail.com Washigto, DC September 16, 2007 Burke Lake Park Cotact: Mimi, (703) , mkr3@cox.et Remember to visit TEAM.htm for registratio, doatios ad more iformatio about these evets. 14 Hydrocephalus Associatio Newsletter Summer 2007

15 Fudraisig News Fudraisig Thaks: Golf Outig, Diamod Sale, Maratho Ruer The Graham family of Chico, Califoria, are becomig expert fudraisers. I cojuctio with Result s Radio, they orgaized a golf touramet that was held o April 16. It was a fu-filled day that icluded a roud of golf, luch, driks, dier, a raffle ad a silet auctio. Over $4,500 was raised for the Associatio from the raffle ad silet auctio! May family ad frieds of the Graham family came out to help, alog with Associatio members Mary Jae ad Jamie Kelly. Thak you to everyoe who was ivolved i makig this evet a amazig success! Member Nathalie Basick Guarch of the Miami, Florida, area is sellig a fiveich crystal diamod from her family store, Uusual by Giselle, located i Key Biscaye. She calls this her Hydrocephalus Awareess Project. The diamod remids Nathalie of her little gem, who has hydrocephalus. Oe hudred percet of the profits will be doated to the Associatio. Thak you, Nathalie! Member Mariska Sijder from the Uited Kigdom ra a half-maratho o March 25, The half-maratho is ru every year by as may as 10,000 people. This year marked the fourth time she has ru it. Mariska was bor with hydrocephalus ad decided that this year it would be ice to ru for a charity that meas somethig persoal to her. This is our first evet overseas; thak you, Mariska! Birthday Boys For the sixth cosecutive year, Jack Johso held a fudraisig birthday party ad asked guests for doatios to be made to the Associatio i lieu of gifts. Jack raised $300 o behalf of his youger sister, Grace, who has hydrocephalus. His mom, Roby, says, My husbad ad I are so proud of our so. What has bee equally excitig is to see others be ispired to do somethig similar to beefit a worthy cause. Happy 11th birthday, Jack! Rob Motgomery celebrated his third birthday with family ad frieds at a beefit held i his hoor. Rob was diagosed with hydrocephalus at 11 moths ad is doig great! The beefit icluded a eveig of dier, kids games, musical etertaimet ad a silet auctio. Rose ad David, Rob s parets, doated $1,000 from the proceeds to the Associatio to help more tha just our so. Thak you Rob, Rose ad David. Happy third birthday, Rob! Hydrocephalus Associatio Newsletter Summer

16 Support Thak You to Our Corporate ad Foudatio Supporters Oe-third of our aual reveue comes from corporate ad foudatio program grats, ad TEAM sposorships. This essetial support allows us to ehace ad expad programs ad services to beefit our commuity of people affected by hydrocephalus. Thak you for your geerous fiacial support i 2006! Platium Sposors: $25,000+ Codma, a Johso & Johso Compay Medtroic Foudatio Medtroic Neurologic Techologies Gold Sposors: $5,000 $24,999 Aesculap Ah Family Foudatio BraiChild Foudatio George H. Sady Foudatio Itegra Foudatio Itegra Life Scieces Oe Small Voice Foudatio Phoeix Vygo Neuro Rudi Schulte Research Istitute Sophysa Silver Sposors: $1,000 $4,999 Autodesk, Ic. Chief Idustries, Ic. Craig & Vicki Brow Family Foudatio Dome Costructio Corporatio GFDS Egieers ISPE Sa Fracisco Chapter Nibbi Brothers Costructio Rya Associates Broze Sposors: Up to $999 1st Bak of Littleto A+ Childre s Therapy A1A Family Eye Care, Ic. Ala B. Almad, PA Arapahoe Park Pediatric Ashefelter & Forster Atlatis Custom Pools, Ic. Clift & Co. Pools & Spas, Ic. The Collera Firm Colorado Rockies Baseball Club Cowboy Auto Repair D & J Trasport Solutios, Ic. Doweast Pesio Services, Ic. Droste Cosultig, Ic. Edward Svedso Excavatig F & R Tafoya Paitig First America Title Isurace Co. Fiserv Ledig Solutios Fisheye Video Productios, Ic. Galleo Pools Guthrie Builders Hair Jazz Hartco Sales, Ic. HPE Group Meet Our 2007 Scholarship Recipiets! HSM Electroic Protectio Services Hydrocephalus Support Group Jackso RV The Krizer Group Lerer Corporatio Log Islad Precast, Ic. Method 360, Ic. Metro Pai Ceter, Ic. Natioal Refud & Marketig Services, Ic. Omi Hair Desig Power Commuicatios Purple Sage Atique Gus Rambo Vetures, LLC Red Robi Gourmet Burgers Schley Look & Guthrie LLP The Sig Statio Small Woders Imagig, LLC St. Lawrece & Atlatic Railroad Co. Syc, Ic./Subway Taykar Mechaical, Ic. Toyota Motor Egieerig & Maufacturig North America, Ic. Tredsetters Hair & Ski Care, Ic. U.S. Cetral Agecy Services Corp. W. West Equipmet ad Furishigs Waper, Newma, Wigrizer & Brecher Wolfdale s Yerkes Associates, Ic. Keith True is the recipiet of the Mario J. Tocco Hydrocephalus Foudatio Scholarship. He plas to major i biology at either St. Louis Uiversity i St. Louis, Missouri, or the Uiversity of Illiois i Champaig, Illiois. A recet graduate of St. Charles North High School i St. Charles, Illiois, Keith has bee o the hoor roll every semester while maitaiig a 5.0 grade-poit average, ad was iducted ito the Natioal Hoor Society. He ejoys playig volleyball ad is o the varsity volleyball team at his high school. At 16, he was diagosed with hydrocephalus ad a brai tumor. He iteds to pursue a career i medicie i hopes of becomig a pediatric eurologist. Keith says, I see it as my way of givig back to the medical commuity that has give me a secod chace at life. Nicholas Alla Orriso is the recipiet of the Justi Scot Alsto Memorial Scholarship. He has bee accepted ito his top choice school, Wester Carolia Uiversity i Cullowhee, North Carolia, ad plas to major i commuicatio studies with a emphasis o broadcast jouralism. He hopes to oe day become a radio morig-show host. Nicholas has bee very active i sports, icludig 16 Hydrocephalus Associatio Newsletter Summer 2007

17 Scholarships golf, idoor track, cross coutry, Ultimate Frisbee, swimmig, idoor soccer ad baseball. I additio to his sports ivolvemet, he voluteers for the Special Olympics ad the Red Cross. Nicholas wats to set a example for childre with hydrocephalus: I wat to help youger kids realize that although there are limitatios, there is a tremedous amout of thigs they ca do! Haylea Ly Blak is the oe of two recipiets of the Morris L. ad Rebecca Ziskid Memorial Scholarship. She ejoys readig medical or mystery books ad watchig televisio programs such as Grey s Aatomy ad ER. She has voluteered at High Poit Regioal Heath Systems i High Poit, North Carolia, sice the eighth grade ad is a member of the Natioal Beta Club. O the weekeds, Haylea works as a waitress. Ispired by a radiology techicia at the High Poit Regioal Health Systems whom she had much cotact with as a patiet with hydrocephalus, Haylea aspires to be a certified radiology techicia. Bor three moths premature, she explais, The impact [of hydrocephalus] o my life is big but i the same sese little because I am fortuate to be here I am glad every day for the life I have. Natalie Geis is oe of two recipiets of the Morris L. ad Rebecca Ziskid Memorial Scholarship. She curretly atteds the Uiversity of Utah ad has a strog iterest i medicie ad ursig. Natalie has played basketball sice she was seve years old ad was a starter o her high school varsity basketball team. After a shut complicatio two years ago, Natalie has worked reletlessly to remember basketball plays ad adapt to the quickess of the game. She says that havig hydrocephalus is a remider that I am differet ad my differeces are ot a hadicap. Whe she is ot attedig classes, she works part-time as a phlebotomist. She ow coaches basketball ad metors kids. Bret Michael Meyers is oe of two recipiets of the Gerard Swartz Fudge Memorial Scholarship. He will atted Grad Valley State Uiversity i the fall to study physical therapy. He acquired hydrocephalus two weeks prior to startig his freshma year i high school. Prior to surgery, Bret played football, basketball ad baseball. Post-surgery, he cotiues to play basketball ad baseball ad refuses to allow hydrocephalus to keep him from participatig i his favorite hobbies. Although he does ot play football, he became maager of the team ad was voted captai this year. I additio to sports, he ejoys listeig to music, attedig daces, ad ridig sowmobiles ad dirt bikes. Bret has high regard for his family ad frieds who have bee ecouragig every step of the way. The support he has received from loved oes ad health professioals has led Bret to be a more carig ad thoughtful perso. Daiel Hohma is oe of two recipiets of the Gerard Swartz Fudge Memorial Scholarship. He ejoys spedig time with family ad frieds, playig baseball, watchig movies ad ridig his bike. He has bee actively ivolved i extracurricular activities ad voluteer work, icludig the Natioal Hoor Society, Studet Coucil, Math League ad Childre s Hospital of Philadelphia s Youth Advisory Committee. He plas to eter college i the fall to pursue a degree i social work. Daiel has a brai tumor ad hydrocephalus with two VP shuts, but that does ot keep him from leadig a active life. His experieces as a patiet ad his desire to help childre have heighteed his iterest i social work. Daiel says, I wat to be able to help parets uderstad that their childre ca lead a ormal life with hydrocephalus. I ca explai to others all the activities that I ejoy despite havig hydrocephalus. Amada Shak is oe of two recipiets of the Athoy Abbee Scholarship. She is preparig to eter her secod year at Tompkis Cortlad Commuity College i Dryde, New York. She plas to ear a two-year liberal arts degree ad the trasfer to a four-year college to pursue a secod degree. She curretly atteds school full-time ad works fulltime at a food market. Amada believes that hydrocephalus has had a small impact o her life sice birth, but that chaged drastically i December 2004 whe her twi sister, who also had hydrocephalus, passed away. Amada s high school math teacher, Hele Gibso, says, I admire Amada for her courage, perseverace, itegrity ad work ethic. Amada lives i a apartmet o her ow, ad says, I ejoy beig idepedet ad beig able to do thigs for myself. Marcus Booth is oe of two recipiets of the Athoy Abbee Scholarship. He has bee accepted ito the hoors program at Tulae Uiversity, where he will major i biology with the itetio of eterig medical school upo graduatio. Marcus says medical school is a opportuity where I ca lear ew ways to chage someoe s life the way my surgeos chaged mie. Marcus is the presidet of the Math Club ad a dedicated team member represetig his high school at the Uiversity of Iterscholastic League competitios. Every summer, he voluteers at the Parklad Memorial Hospital i the orthopedics departmet. I his free time, he plays jazz piao ad classical guitar. Marcus is workig toward his goal of becomig a surgeo ad says, My goals are fairly lofty, so I work hard to ot lose sight of ay of them. NOTE: See page 19 for a complete listig of our scholarship fialists. Hydrocephalus Associatio Newsletter Summer

18 Support Strategies for Workig with Discharge Plaers What do you do whe your loved oe goes to the hospital? If you are carig for someoe with demetia, you probably worry about the hospital s uderstadig of the illess ad the ways your loved oe eeds to be cared for. If there is a acute episode for example, a stroke, a broke hip or peumoia you worry about your loved oe gettig better, ad what his or her eeds will be whe he or she leaves the hospital. Ofte, caregivers sped may hours at the hospital, overseeig care ad offerig support. By the time your loved oe is discharged, you might be more tired tha ever ad you might be scared that you wo t kow how to provide care ow. So, what happes whe the hospital stay is over? We ve all heard about the late-friday-afteroo discharge from the hospital. You have bee there every day, talkig to the urses about your loved oe s coditio ad eeds. Suddely, you are told that he or she is goig home this afteroo. There has bee o discussio about home care eeds ad what you eed to kow. Perhaps you ve met with a discharge plaer, who has told you a little bit or arraged for your loved oe to go to a rehabilitatio facility for physical therapy. Or you have bee told to look at ursig homes ad let the discharge plaer kow what you ve decided. You may have bee told that your loved oe eeds 24-hour care, but o oe has told you how to fid that care or what it will cost. You may ot eve kow how to get your loved oe home from the hospital-who will pay for a ambulace if it s eeded, how will he or she get up the stairs i the house, where will he or she sleep if the bedrooms or bathrooms are upstairs? Several govermetal agecies ad research projects have examied the discharge plaig process, the fragmetatio of services ad what caregivers eed to kow to succeed i avigatig the care system. All agree that chages are eeded to make discharge plaig more successful. It has bee well documeted that patiets are beig discharged from the hospital quicker ad sicker tha i the past. This also meas that patiets have more complex care eeds ad may be dealig with multiple illesses ad disabilities. Nurse discharge plaers may tell you about medical situatios, ad social work discharge plaers will tell you about commuity orgaizatios, but i too may cases, o oe is overseeig the iformatio ad the referrals you are give or how to access ad coordiate the help you eed. If your loved oe is discharged to a rehabilitatio facility, the discharge plaer at the hospital will assume that someoe at the facility will aswer your questios. Ufortuately, the staff at the facility may ot be traied to respod with the iformatio you eed. There is o care coordiatio across the discharge process, from hospital to facility to home care. You may be left stressed, cofused ad feelig helpless. What ca you do uder these circumstaces? First, it is importat to be a advocate ot oly for the patiet but also for yourself. Be aware that there is a appeals process available if you feel your loved oe is beig discharged too soo. (See For more iformatio at the ed of this article.) Write dow your questios ad make sure you get aswers before takig your loved oe home. The first set of questios is about the illess: What is it ad what should you expect i terms of recovery? What should you watch out for? Will you get home care ad will a urse or therapist come to your home to see that the patiet is doig OK? How do you get help advice about care, iformatio about dager sigs, a phoe umber for someoe to talk to, follow-up medical appoitmets? Have you bee give iformatio either verbally or i writig that you uderstad ad ca refer to? The secod set of questios is about treatmet ad care: What medicie should be take ad whe? What side effects should you be lookig for? How do you help your loved oe trasfer from a bed or chair to stadig; what do you do if he or she falls (particularly whe you are holdig him/her)? What medical equipmet does your loved oe eed e.g., a hospital bed, commode or walker ad how do you use them? Will someoe come to your home ad do a assessmet to see if you eed home modificatios to care for your loved oe i his or her ew coditio? Third, where to fid help i your commuity: What agecies are available to help you with, say, trasportatio or meals? What is adult day care ad how do you fid out about it? What public beefits are you eligible for, such as I-Home Supportive Services? Where do you start to look for such care? (Make sure you are give specific referrals ad ot just a resource guide, which ca be overwhelmig.) Whom ca you call to help with these referrals or if you have trouble coectig with a agecy? Ad, fially, you eed to have the discharge plaer address your eeds as a caregiver. 18 Hydrocephalus Associatio Newsletter Summer 2007

19 Support This meas that they should assess your ability to do the required tasks: Have they traied you i trasfer skills? Do you kow how to tur someoe i bed so he or she does t get a bedsore? Do you kow how to help someoe swallow a pill or give a ijectio? Does your loved oe require help at ight ad, if so, how will you get eough sleep? What thigs are scary or ucomfortable for you to do, e.g., chagig a diaper? What medical coditios ad limitatios do you have that make providig this care difficult? We kow that if your health is compromised i carig for someoe, he or she will retur to the hospital or eed ursig home placemet sooer. It is importat for you to say, I caot do that, rather tha to hurt yourself or your loved oe tryig to do somethig. We ofte get calls from caregivers sayig that they do t kow where to start to get help, or are cofused by what the discharge plaer has told them. Feel free to call your Caregiver Resource Ceter if you eed guidace whe your loved oe is i the hospital ad whe the discharge pla is beig made. Ad most importat: Do t be afraid to be assertive i gettig your cocers addressed before your loved oe comes home. For more iformatio Ceter for Medicare Advocacy s Tip Sheet for Beeficiaries: Hospital Discharge Plaig Medicare (800) MEDICARE Medicare Rights Ceter Medicare Home Health eligibility iformatio cotethomehealtheligibility.html A Family Caregiver s Guide to Hospital Discharge Plaig, published by the Natioal Alliace for Caregivig ad the Uited Hospital Fud of New York familydischargeplaig.pdf Used with permissio of Family Caregiver Alliace Family Caregiver Alliace. For more iformatio, visit or call (800) If your eeds are ot beig met, Plaig to Leave the hospital, a publicatio of Plaig for Elders, suggests the followig: If you have Medicare (with or without Medicaid or other coverage): Isist o a writte otice. Fid the Medicare Quality Improvemet Orgaizatio for your state at the MedQIC website: org. Fid the State Health Isurace Assistace Program for your state at the SHIP website: tacepartership.org. Be aware that you may have the right to a expedited appeal. If you have Medicaid but o Medicare cotact the Legal Aid Society i your area. If you have private isurace but ot Medicare, call your isurace compay or HMO to fid out about its rules ad the appeal process. Cogratulatios to the 2007 Scholarship Fialists Tricia Ambrosii, IL Eleaore Arold, CA Roberta Bader, PA William Bakos, OH Carly Barrow, NH Eva Bea, FL Steve Bertz, CT Lidsay Bimmler, MA Jessica Borjo, IL Aliso Boulager, MA Veroica Brockett, NY Christie Burke, CA Robert Carlso, CO Blake Coers, IL Sherea Combs, NV Catharie Cox, VA Courtey Daly, IL Emily Dibbell, NY Cayla Doyo, OH Dyla Fitzpatrick, FL Abraham Flaiga, IA Catria George, TX Kirsty Grat, FL Olivia Greee, FL Meagha Hadzlik, NY Roby Harold, CA Jacob Hirsch, CA Truc Ho, AZ Ashley Isaac, OH Christia Kig, FL Michelle Koehler, NJ Rya Lake, TX Amada LeClair, KS Alissa Lehma, AZ Adam Lickliter, IN Michael Liptrap, WA Cody Mace, WA Christopher Marti, MI Laura McDoell, CA Christopher McQuilki, CA Nicole Mellett, PA RKvia Shavo Medez, NJ Mega Naaroe, MI Cathy Ostefeld, NJ Christie Pappalardo, IL Daielle Player, NJ Chad Rapoza, CA Melia Refer, AK Elizabeth Roudette, TX Joatha Smelcer, TN Kriste Stafford, IN Krystal Swartz, TN Trevor Terpstra, MI Meredith Vitrao, MD Melissa Wiltsey, NJ Catherie Ae Widyk, MN Nathaiel Wog Loi Sig, NY Chelsea Wright, AZ Jamie Wright, TX Madelie Ziser, CA Hydrocephalus Associatio Newsletter Summer

20 Support Regioal Support Groups are Expadig! By Pip Marks ad Debra Howell Paula Keyser, who is the leader of the Hydrocephalus Associatio s affiliate i Tampa Bay, Florida, reports a very successful hydrocephalus picic this past April; with a speaker presetig o Medicaid waivers. Paula hosts support group meetigs bimothly ad ivites everyoe i the area to atted. Her Jue meetig will feature a europsychologist presetig o europsychological evaluatios ad hydrocephalus. Paula cotiues to do great work i raisig public awareess of hydrocephalus at the local level through ewspaper articles ad televisio iterviews. September 2 is the date for the Tampa Bay TEAM Hydrocephalus evet. To cotact Paula, TampaBayFL@hydroassoc.org. Hilary Rosse ad Stephe Dombrowski, our affiliates i Clevelad, Ohio, hold mothly meetigs with a variety of preseters ad topics. April s meetig discussed hydrocephalus research. They will hold their fifth Aual Hydrocephalus Ru, Walk ad Family Day o August 5, 2007, ad would love the support of local Associatio members. To cotact Hilary about support group meetigs dates ad the August 5 evet, NEOhioHydroassoc.org. Our visio for more local hydrocephalus support groups is comig about. I additio to our two pilot regioal affiliates metioed above, there are three ewly formed hydrocephalus groups i Arizoa, New Jersey ad Illiois. Maggie Varlad, a eurosciece program coordiator at Barrow Neurological Istitute i Phoeix, Arizoa ad a member of the Regioal Expasio Advisory Committee, has joied forces with Milto ad Phyllis Newma, members of the Hydrocephalus Associatio, to form a NPH Support Group at Barrow. Meetigs are held about three times per year ad feature a speaker ad time for people with NPH ad their families to share ad support each other. Milto ad Phyllis faciliate the meetigs; ad Maggie provides logistical support ad recruits physicias ad other medical professioals as speakers. Past speakers have icluded Dr. Harold Rekate, chief of pediatric eurosciece, ad Dr. Jiog Shi, medical director of the NPH program, both from Barrow Neurological Istitute. Milto s advice for people thikig of startig a support group: All you eed is a strog sese of watig to help others i the same situatio. The get i touch with people who ca help you, to give you ideas ad [a way to cotact people] i a like situatio. If you feel very strogly, as we did, the you will be able to overcome whatever problems arise. We foud very few problems, quite possibly because we had very able help from Maggie ad the Associatio. If you would like more iformatio o the Barrow Neurological Istitute NPH support group, Milto at miltew@cox.et. Hydrocephalus Associatio member Kim Illios from Ediso, New Jersey, ad Deborah Rabick from Chicago, Illiois, have both started local hydrocephalus support groups ad are also iterested i becomig our affiliates i the future. We support the growig of these groups by sedig out s to all members i their areas regardig meetig dates ad evets, ad by supplyig educatioal booklets. If you meet people from ay of these areas, be sure to let them kow that local support is available. Ad if you would like to kow more about our Regioal Support Affiliate Pilot Program, cotact pip@hydroassoc.org HA Scholarship Recipiet Caitli Mayard Iters with Nacy Pelosi Caitli is a past recipiet of a Hydrocephalus Associatio scholarship ad has bee very ivolved with the Associatio ad atteded cofereces. Her family orgaizes a Thaksgivig Ru i Massachusetts every year to raise fuds for the Associatio. Caitli writes, This past semester I had the privilege of iterig i the office of the Speaker of the House of Represetatives, Nacy Pelosi. I worked i her persoal office i Washigto, D.C. My work ivolved receivig the mail, sortig ad eterig it i the database, mailig letters to her costituets, ad workig with the appropriatios iformatio for Sa Fracisco. I am a social work major ad have leared i the past three years of schoolig that social programs are chaged through govermet, so I took this itership to lear social work policy ad lobbyig where it happes, i the govermet. I leared so much from this itership ad met may woderful people. My special thaks to Speaker Pelosi ad her chief of staff, Joh Lawrece. 20 Hydrocephalus Associatio Newsletter Summer 2007

21 Associatio News Board Member Profile: Mark Geiger word of advice: Whe Emily Fudge, A foudig member of HA ad a giat of a huma beig amazigly wedged ito a petite frame, suggests that it would be a good idea for you to joi the Board of Directors of the Hydrocephalus Associatio, it s i your best iterest to do so. I joied i 2001, about five miutes after her commet. I acquired hydrocephalus i 1982 at the age of 14; whe I graduated from college i 1991, my mother persuaded me to iterview for a job with a shut compay, which has led me o a 16-year jourey i hydrocephalus shut sales ad marketig. What a adveture! Make o mistake about it: There are some very committed people i this busiess who would give their left arm to drive a spike ito the heart of hydrocephalus. You ve o doubt see or met some of them, I m sure. I have a lovely wife ad two beautiful daughters, ages six ad two. Beig a paret has give me the deepest respect for parets of childre with hydrocephalus. I ve worked six HA atioal cofereces ad have sat o the Scholarship Committee for five years. Whe approachig these tasks, I ofte postulate that there s o way each time ca top the last time but they cosistetly do. Why? It s because of the amazig people i the HA commuity ad o the staff. A accout I wrote about a ieyear-old girl with hydrocephalus who atteded my compay s holiday program has bee accepted for publicatio i the 2007 Chicke Soup for the Soul Christmas Treasury. I wrote it because this girl s difficult experiece tured triumphat success embodied the ucay heart, wisdom ad spirit of you, the people who make this orgaizatio so woderful. As I wrote i my article, this tiy source of brilliat light kocked us all off our chairs with a gesture so ucommo. I m doatig the moey from the article to the Hydrocephalus Associatio to help admiister the scholarship fud. Who s with me? Medical Advisory Board Member Dr. Bruce Kaufma Soars O Jue 20, 2006, pediatric eurosurgeo ad pilot Bruce Kaufma, MD, accompaied by master certified flight istructor ad Midwest Airlies pilot Matthew McDaiel, completed a record-settig flight they have ickamed Romp Aroud Wiscosi. The Natioal Aeroautics Associatio certified this flight as a record the fastest time to lad at all public airports i Wiscosi: 16 hours ad 42 miutes ad has recetly chose it as oe of the five most memorable records for 2006! The goal was to lad at every airport i Wiscosi i just oe day. That s a total of 104 airports ad more tha 2,000 miles. The aircraft, owed by Dr. Kaufma, is a sigle-egie Cirrus SR-22 christeed Blue Kids Oe i hoor of the hospital s blue kids logo. The flight was a fudraiser for the pediatric eurosurgery program at Childre s Hospital of Wiscosi. All expeses associated with the flight were doated by the two pilots. Matt ad I decided to tap ito our love of flyig, ad combie it with our devotio to childre, to create a differet kid of fudraiser, says Dr. Kaufma. Not oly does this set a atioal record, but I am hopig this adveture serves a greater purpose of raisig awareess ad fuds for Childre s Hospital. Kid s Corer Aswers A A C B I E D U C A T I O N P D T R N V T T O R T E A S I V A A F E R S E P P O U D B O N I E N E R M R C N L I C C E N C T A R C O O L T A A A U S T R T L N G M A R G T C E U I I M M A R P S A N H Y D R O C E P H A L U S O E U N A N L N O L M I P O S T L I N K E T N O M C P U I E S A C I S N F L A A O N S R E S E A R C H N B T R D H R O A D I S A B I L I T Y U E T P R E S S U R E O T T N O B S T R U C T I O N I C T Catheter Isurace Hydrocephalus Shut Hydrocephalus Associatio Newsletter Summer