ANNUAL PROGRESS REPORT

Transcription

1 ANNUAL PROGRESS REPORT TO: Bard f Directrs ;m/ FROM: Jan O. Weiss, Executive Directr. DATE: Octber, 1993 QUARTERLY REPORT: Octber 1, 1992 thrugh September 30, 1993 Membership as f September 30, 1993 Individual Members: 210 Organizatinal Members: 203 Membership as f September 30, 1992 Individual Members: 220 Organizatinal Members: 172 Incming Telephne Calls fr One-Year Reprting Perid: Ttal: Apprximately 6,004* SUBJECT OF CALLS: Inquiries re: specific disrders and/r genetic cunseling: 21 % Administrative 9% Cnferences: 8% Calls fr miscellaneus infrmatin: 10% Inquiries re: supprt grups: 12% Infrmatin re: Alliance and membership: 7% Requests fr technical assistance: 7% Scial Issues and Ethics: 4% Calls frm Bard Members: 5% Inquiries abut insurance, discriminatin and plicy: 5% Directry f Natinal Genetic Vluntary Organizatins: 3% Calls related t reginal genetics netwrks r CORN: 3% Media: 2% Calls frm students: 2% Grants, Funding, and Accunting: 3% *Please nte: This averages t 500 calls per mnth. The subject matter and number f calls has sme variability depending n wrk in prgress at the Alliance and publicity received. 1

2 Funding Activities Grant Am>licatins: Apprved: pepartment f Health and Human Services, Genetic Services Branch: 3-yr cntinued funding grant apprved. Natinal Institutes f Health, Natinal Center fr Human Genme Research, Ethical Legai and Scial Implicatins Prgram: Applicatin fr educatin prject with Gergetwn University fr 112 the amunt requested. Sern Labratries: Alliance/NORD cnference $500 apprved. Integrated Genetics, subsidiary f Genzyme Crpratin: Funding f Nvember, 1993 media wrkshp and pamphlets: Apprved $10,997 RGK Fundatin: Applicatin fr funding f Health Care Resurce Prject: received $5,900 Jacb & Hilda Blaustein Fundatin, Inc. fr Alliance/NORD cnference: apprved $2,500 The Lester & Eleanr Levy Family Fund fr Alliance/NORD cnference: apprved $400 Matemai and Child Heaith, Genetic Services Branch fr Alliance/NORD cnference apprved fr $10,700 fr cnsumer supprt. Sandz Pharmaceuticals: Printing f 7,000 prgrams fr Alliance/NORD cnference apprved and cmpleted. Natinai Sciety f Genetic Cunselrs: $2,000 fr Directry f Natinal Genetic Vluntary Organizatins. March f Dimes: Applicatin fr $29,000 fr revisin f Health Insurance Resurce Guide and annual meeting: apprved but nt funded. Pendin~: Bitechnlgy Industry Organizatin: Applicatin fr funding f Alliance Library Prject, pending. Natinal Institutes f Health, Human Genme Mapping Prject, Ethicai Legai and Sciai Implicatins Prgram: Discussin re: Alliance rle in Genme Prject nging. Natinal Institutes f Health: Pilt prject in cnjunctin with CORN fr genetics data base: pending. Denied: Mars Fundatin: Request fr funds fr Nvember meeting denied Enzn, Inc: Request fr funds fr Nvember meeting denied Rbert Wd Jhnsn Fundatin: Applicatin t fund Health Care Resurce Guide: denied. Executive Office: Paid Staff Directr: Jan Weiss 4/5 time Assistant Directr: Martha Vlner 112 time Cnsumer Representative: Mary Ann Wilsn 2 days per week Bkkeeper: Gerry Siegler 2 days per mnth Secretary: Miek Ksbayashi days per week Vlunteer: Dnna Fster 1 day per week 2

3 Current staff is wrking vertime n an unpaid basis. The scpe f ur activities is such that we are severely understaffed. We are having t rely mre and mre n vlunteer help t keep up with wrklad. Alliance Representatin/Exhibits Octber 5-6 NIH \Vrkshp n IRBs Rckville, MD Octber University f Vt. Burlingtn,VT Octber 28 Mayr's Cmmittee n Newbrn Washingtn, DC Nvember 8-11, 1992 American Sciety f Human Genetics San Francisc, CA Nvember 20-22, 1992 December 2, 1992 December 4, 1992 December 6-9,1992 Jan. 13, 93 Feb. 5 Feb. 10 & Nat'l Sciety f Genetic Cunselrs Alliance Membership Meeting Phenix, AZ Cnsrtium n Rare Diseases Washingtn, DC Office f Technlgy Assessment Washingtn, DC Bimedical Ethics in Public Plicy Genme Analysis - DOE Wrkshp Cld Spg Harbr, NY CCD Annual Meeting Rckville, MD NIH-NF Meeting NIH - Panel fr Onclgy Scial Wrkers Feb Feb 24 March 5 March 13 March 25, 26 March 27, 28 AAAS Presentatin NORD Banquet CORN Meeting MARGHN Meeting Genetics Orgs. ASHG Bard Meeting + COMGO Bstn, MA Washingtn, DC Alexandria, VA Crystal City, VA San Francisc, CA LaJlla, CA April 2 AAAS - Ira Magaziner briefing Washingtn, DC April 7 a.m. Maternal & Child Health Rckville, MD p.m. White Huse Washingtn, DC April 22 Gergetwn U. Pediatricians Washingtn, DC Meeting April Family-Prfessinal Cllab. Burlingtn, VT Prject Advisry Cmmittee April American Academy f New Yrk, NY April 30 May 4 May 7 May 10 May 11 May 12 May 15 May 20 May 21 & 22 May 25 May 28 May 3~-June 1,93 June 5 June 11 Neurlgy Families USA-Health Refrm Washingtn, DC CDMGO Washingtn, DC Media Cmmittee Meeting Bstn, MA ELSI, NIH Bethesda, MD Ira Magaziner Briefing Washingtn, DC Cnsumer Panel Gergetwn U. Washingtn, DC TAG Lng Island, NY Senate Hearing, Dr. Francis Washingtn, DC Cllins Family Supprt Institute Albany, NY Hillary Clintn - Health Refrm Washingtn, DC Industrial Bitechnlgy Assn Washingtn, DC ACCH - Exhibit & Rep Chicag, IL Mid Atlantic Spina Bifida McLean, V A Cnference Sickle Cell Cnference Washingtn, DC CORN/MCH 3

4 July 9 July 16 Aug.19 Aug. 21 Aug. 17 Aug. 29,30 Sept. 9 Sept. 10, Sept. 13 Sept Sept. 26,27 JOW, JaW MAW JaW Siegler JOW, CCD Health Refnn Briefing The Hastings Center Nat'l Marfan Fundatin Vn Hippel Lindau Cnf. Alliance Exhibit MARHGN Steering CF Studies Cnsrtium CCD - Health Refrm Briefing CCD Health Refrm Briefing NPND Legislative Cnf. Genetic Database Meeting Washingtn, DC Pughkeepsie, NY Prtland, OR Annaplis, MD Dallas, TX Alexandria, V A Washingtn, DC Washingtn, DC Washingtn, DC Washingtn, DC Baltimre, MD ACTIVITIES Daily telephne intakes and referrals fr genetic services Handling requests fr infnnatin n specific disrders Cntinuing cunsel t new and existing genetic supprt grups Distributin f Directry f Natinal Vluntary Genetic Organizatins, Health Insurance Resurce Guide, Empty Pcket Syndrme, and Infrmed Cnsent Guidelines. DeVelping new funding surces and writing grant applicatins Wrking with White Huse and with ther health rganizatins t insure that genetic treatments and services are included in health care refnn Wrking with CORN t fnnulate a cnsumer-friendly genetics resurce clearinghuse Cmpleting media guidelines and wrking n wrkshp t be held in cnjunctin with Nvember, 1993 annual cnference. Cmpleting Infrmed Cnsent brchure. Preparing fr Health Care in Flux Cnference fr Nvember, 1993 meeting t be held in partnership with the Natinal Organizatin fr Rare Disrder Publicatins: Alliance Brchure Starting a Self Help Grup Chapter Develpment Needs Assessment fr Supprt Grups Bibligraphy: Genetics fr High Schl & Cllege Students Incrprating and Obtaining Nn-Prfit Status Incrprating Cnsumers int Reiinal Genetics Netwrks Health Insurance Resurce Guide Directry f Natinal Genetic Vluntary Organizatins ALERT - mnthly Infrmed Cnsent: Participatin in Genetic Research Studies Prceedinis: Empty Pcket Syndrme: Hw t Get Funding Peer Supprt Guide Annual Reprt 4

5 PLANNING FOR FUTURE ALLIANCE PROJECTS Planning fr 1994 Alliance Cnference n Wrking with the Media Media Cmmittee: Publicatin f media pamphlets fr cnsumers and fr the media Health Insurance Resurce Guide and Directry f Natinal Genetic Vluntary Organizatins.. Starting prcess f updating and rcvisin NIH-ELSI funding. Wrking t find additinal surces f funding fr Alliance prjects. Explring ptins fr funding Alliance Library Prject. Anticipated Representatin/Exhibits Oct. 6 Oct Oct Oct. 30-Nv. 2 Nv. 12 Nv Feb , 1994 March 13-15, 1994 April 15-17, 1994 Nat'l Assn. f Rehab. Facilities Attendant Care Cnference Grad Schl f Scial Wrk March f Dimes/Getwn Curse Am. Academy f Pediatrics Exhibit CCD - Health Refrm Meeting Alliance Health Care in Flux Meeting Am. Grp. Psychtherapy Assn. MOD & Am Cllege f Med Genetic CORN Steering Cmmittee Washingtn, DC Burlingtn, V Washingtn, DC Washingtn, DC Washingtn, DC Alexandria, V A Washingtn, DC Orland, FL Washingtn, DC Future Directins f the Alliance It is said that a healthy rganizatin mves frward rather than remaining static. The Alliance is at a crssrads f its rganizatinal develpment. Increasingly well knwn, respected, and sught after, demands upn its financial and staff resurce exceed supply. Staff has examined each f the majr activities with an eye tward eliminating thse which are nt essential t the Alliance missin. Our cnclusin is that it wuld be seriusly detrimental t the rganizatin t eliminate the tll-free line, the exhibits, the cnferences, the newsletter, the technical assistance, and the mnitring f health plicy and insurance practices. ( Fund raising effrts are arguably utilize time which wuld be better spent in carrying ut the central activities.) We cnclude that current activities enhance the Alliance and that the Alliance shuld mve frward n tw frnts. (1) T meet public demand the Alliance shuld create a cnsumer library/resurce center which includes bks, pamphlets, cmputer netwrks, and videtapes, alng with ffice space and persnnel. (2) T gain efficiency additinal administrative help is required. T accmplish bth, Bard assistance in fund raising effrts is essential. 5