Vasculitis Foundation

Transcription

1 Vasculitis Foundation General Information Contact Information Nonprofit Vasculitis Foundation Address PO Box Kansas City, MO Phone (816) Fax Website Facebook facebook.com/vasculitisfoundation Twitter At A Glance Former Names How to donate, support, and volunteer Wegener's Granulomatosis Association Wegener's Granulomatosis Support Group, International We are pleased to accept donations via our website, phone, or mail. We also accept in-kind donations, matching employee corporate gifts and volunteers. We also accept gifts in honor and in memory of our patients and members. 1

2 Mission & Areas Served Statements Mission Statement The Vasculitis Foundation supports and empowers our community through education, awareness and research. Background Statement The VF (formerly the Wegener's Granulomatosis Association) was founded in 1986 by Marilyn Sampson, a patient with Wegener's Granulomatosis. When Marilyn was diagnosed in 1978, the prognosis for Wegener's patients was six months to two years. She died in 1997 from cancer unrelated to her Wegener's. As a registered nurse, Marilyn was frustrated by the lack of information for patients. She wrote the first patient information packet and networked with doctors around the world to find other Wegener's patients. In 1987 she published the first newsletter and in 1994 organized the first patient symposium. In 1995 the group launched its first website and membership grew by 100s almost overnight. Over the past 30 years, the VF has provided detailed educational materials on all the forms of vasculitis for patients, family members, medical professionals and the general public. The bimonthly 20-page newsletter includes updates on advances made in treatment and research as well as VF activities. The new website, launched in August 2015 receives over 10,000 visitors a month and is recognized as an excellent resource on vasculitis. The VF also has a network of international area contacts and chapters that meet on a quarterly or semi-annual basis in the U.S., Australia, Canada, Denmark, France, Germany, Ireland, Italy, Mexico, New Zealand, Sweden and the United Kingdom. The VF hosts a biennial international patient symposium, which brings together patients, families, and vasculitis experts to learn about advances in treatment and research. The meeting also provides an opportunity for attendees to meet and share experiences. In 2001 the VF established its Small Grant Research Program (now the Research Program) and to date has funded over $2 million in research on the cause and treatment of vasculitis. The Research Program funds novel studies seeking the cause(s) of vasculitis, more effective treatments and a cure for vasculitis. The VF Medical Consultants and Scientific Advisory Board are among the world's finest and most experienced doctors who care for patients and conduct research; they also provide free consultation to physicians treating patients with vasculitis as schedules permit. Impact Statement The Vasculitis Foundation is the largest private funder of vasculitis research and collaborates with researchers around the world to fund promising research. In March 2016 we broke the $2 million mark in funding research since the program was established in We currently have 14 research studies and five fellowships underway at Vasculitis centers around the world. In August 2016 the VF partnered with the Northwestern University Medical Center to establish the Vasculitis Clinical Program in Chicago. This is the first vasculitis center in the state of Illinois and will serve as a referral center for the entire area. Needs Statement Our five most pressing needs are: VF Research Program: establish an endowment fund to enable the organization to increase the # of grants it can fund annually: $5,000,000. Medical Community Education: identify new funding sources to create CME courses to increase awareness of vasculitis to improve diagnostic times and understanding of best treatments for vasculitis: $20, International Vasculitis Symposium: $50,000 to support our biennial three-day educational meeting for our patients, their family members, and health professionals for better understanding of diseases management. VF Fellowship Program: $100,000 to train young physicians in the field of vasculitis. VF Awareness Campaign: $10,000 to create electronic and print materials for ongoing awareness and educational activities. 2

3 CEO/Executive Director/Board Chair Statement As I look retrospectively at the work of the Vasculitis Foundation, I celebrate our successes and recognize our challenges in supporting those with vasculitis through education, awareness, and research. Increasing our membership's understanding of the disease, best practices in disease management and preventing complications through education will lead to improved quality of life. We continue to improve our educational outreach to meet the needs of all afflicted by vasculitis. In addition to our hallmark biannual International symposia, we have expanded our educational outreach to include one-day regional educational events and technological resources webinar offerings. The Foundation's research program funds up to three $50,000 research grants yearly. During the 2nd Research Consensus Conference in April 2012 goals were established for future research and a fellowship program. Providing funding for training of vasculitis fellows will further the depth and breadth of care by increasing the number of vasculitis specialists both in the US and abroad. Since adding this program, the Vasculitis Foundation has funded one VF Fellow in collaboration with the UNC Kidney Center, and one VF Fellow at the University of Pennsylvania. Through our VCRC-VF Fellowship Program, we have funded two additional fellowships at the University of Toronto, Canada. I believe improved awareness of vasculitis in the healthcare and public community will support earlier diagnosis and disease management resulting in better patient outcomes. We strive to improve our outreach through collaboration with other advocates including the NIH, AARDA, NORD and VCRC. These efforts support awareness and assist in securing government funding towards the ongoing research and care of those with rare diseases, including many of the vasculitic disease categories. I believe this is a great opportunity for me to give back to the organization, to share my personal and professional knowledge and experience, and to make a difference to those touched by vasculitis. Service Categories Specifically Named Diseases Specifically Named Diseases Research Diseases of Specific Organs Areas of Service Areas Served Areas International National MO KS 3

4 Programs Programs Support and Education Description Category Knowledge is key to a patient understanding vasculitis. Through our website, bimonthly newsletter, information packets, 800 number and symposia the VF educates its members about the diseases. The educational materials provide the most current information on medications and medical procedures. Health Care, General/Other Patient Education Population Served Adults,, Short-Term Success Long- Term Success Program Success Monitored By Examples of Program Success 1,500 patients worldwide will receive early diagnosis and effective treatment; 3,000 patients already diagnosed will regain their health and will be able to return to pre-disease family and work responsibilities; 2,000 will seek treatment at one of the primary vasculitis centers, and 650 of those patients will participate in research. Patient care studies confirm that knowledge is critical in patient care. With VF support and education, 80% of patients will achieve remission sooner with fewer ongoing health challenges; 100% of patients will receive effective treatment and will "life with" vasculitis as they live life. The VF asks for feedback of its Support and Education Program in the newsletter, website and information packets. The VF also issues member surveys, and provides an evaluation tool at the end of every educational conference and symposium. Fewer patients are suffering full flares because they know how to recognize/treat them. More patients are seeking care at the major vasculitis centers (one of our most popular suggestions). More patients are participating in research trials. Researchers are seeking out the VF's assistance in recruiting patients to their studies. 4

5 Awareness Program Description Category Vasculitis Foundation (VF) members are encouraged to raise awareness of vasculitis and the VF year-round in their local communities. Members distribute information to medical offices, hospitals, health centers, pharmacies and libraries. Vasculitis Awareness Week is celebrated in May and activities include participation at health fairs, town square events, walk/runs, dinners, golf tournaments and road rallies. Events are organized by individuals, families and VF chapters. Health Care, General/Other Early Intervention & Prevention Population Served Adults,, Short-Term Success Long- Term Success Program Success Monitored By Examples of Program Success Success is defined by the number of patients who receive an early diagnosis (1-3 months from illness onset). Recently, the Vasculitis Foundation funded a two-year Epidemiology Study that helps track the number of vasculitis patients, diagnosis, etc. These statistics are vital for the Foundation, as well as the medical community. Research studies report that the earlier a patient is diagnosed, the more likely he/she is to recover his/her health and avoid permanent damage to vital organs and less likely to suffer from chronic health challenges. The goal of the Awareness Program is to make 100% of the medical community aware of vasculitis and to provide them with the knowledge to diagnose and effectively treat the disease. The medical community will also recognize that vasculitis is a critical health issue and demands immediate treatment. Members report all their awareness efforts to the VF on an ongoing basis. They report to the VF on the number of new patients and family members who contact them because of the activity. The VF also tracks new members and always asks how they learned of the VF. Over 10,000 people will be reached through awareness activities. Approximately 20% will join the VF where they are empowered through knowledge and support and are committed to fulfilling the VF's mission to improve lives. The term "vasculitis" is understood by the general public. Physicians are increasingly recognizing and able to diagnose and effectively treat vasculitis patients. 5

6 Research Program Description Category The VF Research Program was established in 2001 to encourage and support research into the cause(s), cure and treatment of vasculitis. Medical Research, General/Other Medical Specialties Research Population Served General/Unspecified,, Short-Term Success Data gathered from VF-funded research studies will be published in 45 medical journals and presented at 15 international medical conferences. Long- Term Success Program Success Monitored By Increase grant awards to $300,000 per year. Increase the number of VF-funded research studies to six per year. Increase the collaboration between international researchers to foster new and innovative clinical and laboratory studies. 1. The number of quality applications received and approved for funding. 2. Researchers are required to submit 6 and 12 month reports as well as a final report on their projects. Funding is not released until reports are received and reviewed by the Research Committee. 3. The number of VF-funded research projects presented at international medical meetings each year. 4. Researchers are also encouraged to provide posters about their studies for VF meetings and symposia. 5. The VF requests ongoing feedback from members of the Scientific Review Board. Examples of Program Success In 2003, the VF awarded a researcher at the Oklahoma Medical Research Foundation a research grant of $35,000. Two years later, with the results determined by our grant, the researcher applied to the National Institutes of Health and received a $1.2 million grant for further study. To date the program has funded over $900,000 for research. The program underwent a complete review in 2006 and based on the results, a new application form was developed, award amounts were raised to $50,000/year or $100,000/two years and the Scientific Advisory Board was expanded to include other medical specialties. These changes will help the VF fund the most worthy research on vasculitis. 6

7 Vasculitis Foundation Fellowship Description Category The Vasculitis Foundation Fellowship provides the opportunity for one- or two-year tracks designed to support the training for physician scientists who wish to gain clinical expertise in vasculitis and who may also wish to pursue an investigational career in this field. The fellowship will be conducted through Vasculitis Centers where there has been a track record of training individuals in the specialty of vasculitis. Diseases, Disorders & Medical Disciplines, General/Other Diseases, Disorders & Medical Disciplines, General/Other Population Served People/Families of People with Health Conditions,, Short-Term Success Long- Term Success The first Vasculitis Foundation Fellow began in July 2013 at the UNC Kidney Center. This fellowship is a two-year commitment and concluded in June The second Vasculitis Foundation Fellow began in July 2014 at the University of Pennsylvania and concluded in Vasculitis is a rare disease and for many doctors, they will never treat a patient with vasculitis. Unfortunately, this means that when patients show symptoms often they go unrecognized or misdiagnosed. In addition, pockets of the United States have no experts in this field. The Vasculitis Foundation Fellowship will encourage medical students to specialize in vasculitis. By partnering with existing Vasculitis Centers, fellows will learn from world experts and then take what they learn to treat patients, or conduct research on the cause and/or cure for vasculitis. Program Success Monitored By Examples of Program Success The Vasculitis Foundation Fellowship program will be monitored by the Research Committee, and by the individual Vasculitis Center that is partnered with the fellow. N/A at this time. 7

8 Vasculitis Patient-Powered Research Network (V-PPRN) Description Category We are a team of patients with vasculitis, caregivers, researchers, data specialists, and providers on a daily mission to share and learn from one another with a vision for the future in clinical vasculitis research. The V- PPRN seeks to transform how clinical research in vasculitis is conducted by directly engaging patients, investigators, care providers, and health systems to develop research methods to electronically collect health records and patient-reported data on a large number of patients with various forms of vasculitis. The goal of the V-PPRN research program is to conduct high-quality studies that will improve the care and the health of patients with vasculitis by exploring research questions that matter most to patients and advance medical knowledge about vasculitis. Diseases, Disorders & Medical Disciplines, General/Other Diseases, Disorders & Medical Disciplines, General/Other Population Served US& International,, Short-Term Success Long- Term Success Program Success Monitored By Examples of Program Success The V-PPRN launched in November 2014 and to date has registered over 1,200 patients in the network. Our original goal was 500 patients. We have completed two research studies and launched the Vasculitis Pregnancy Registry (V-PREG), which is a long-term study enrolling women who have vasculitis who are also pregnant. There is very limited information available on how vasculitis affects pregnancy and this is an area of great concern for our patients and their families. Over the next 5-10 years the V-PPRN will: Drive new vasculitis clinical research studies Engage patients in new ways Directly involve patients in the design and selection of research topics Significantly increase the number of patients eligible to participate Enroll a geographically diverse patient population Broaden the disease spectrum by enrolling patients with many different types of vasculitis V-PREG is governed by a steering committee, operations committee, three working groups and an advisory council composed of patients, researchers, VF staff and support staff from the University of Pennsylvania and University of Southern Florida. Each group conducts evaluations and the steering committee oversees the entire network. We have successfully completed two research studies under V-PREG. Both studies were successful in recruiting the required # of patients and data is being compiled. CEO Comments The VF's programs are instrumental to the organization fulfilling its mission. Awareness leads to more patients being diagnosed, education helps patients be better patients, research improves treatments and support means that no one is battling this disease alone. 8

9 Leadership & Staff Executive Director/CEO Executive Director Term Start Sept Ms. Joyce A Kullman jakullman@vasculitisfoundation.org Compensation $75,001 - $100,000 Experience Joyce Kullman has served as executive director since February Prior to that she served on the VF Board of Directors for five years and was an active member of the Kansas City VF Chapter. As executive director, she has worked to: Increase outreach and support services to patients and families worldwide. Develop educational materials for patients, families and medical professionals to create better understanding of vasculitis. Encourage medical professionals to focus on vasculitis research to increase the number of research studies and expand the areas of research. Expand the VF Medical Consultants to include more geographical areas and vasculitis centers. Establish the Scientific Advisory Board to assist with the VF Research Program. Organize biennial symposia for patients, families and medical professionals. Former CEOs Name Term Ms. Iva N. Roe Oct Mar 2002 Mrs. Marilyn Sampson Jan Oct 1997 Senior Staff Ms. Jennifer Price Title Experience/Biography Financial Coordinator Jennifer joined the organization in 2006 and handles the accounting and financial duties. She is a graduate of Park University and holds a Bachelor of Arts degree in Accounting and Business Administration/Marketing. She is married and the mother of one daughter. Staff Paid Full-Time Staff 4 Paid Part- Time Staff 1 Volunteers 200 Retention Rate 100% Paid Contractors 1 Formal Evaluations CEO Formal Evaluation 9

10 CEO/Executive Formal Evaluation Frequency Senior Management Formal Evaluation Senior Management Formal Evaluation Frequency NonManagement Formal Evaluation Non Management Formal Evaluation Frequency Annually Annually Annually Plans & Policies Organization Has a Fundraising Plan Organization Has a Strategic Plan Management Succession Plan Organization Policy and Procedures Nondiscrimination Policy Whistleblower Policy Document Destruction Policy No No Collaborations American Autoimmune Related Diseases Association (AARDA) Coalition of Patient Advocacy Groups (CPAG) National Coalition of Autoimmune Patient Advocacy Groups (NCPAG) Vasculitis Clinical Research Consortium (VCRC) Missouri Pain Coalition National Organization of Rare Diseases (NORD) Affiliations Affiliation Year National Organization for Rare Disorders - Member 2000 National Organization for Rare Disorders - Member 2007 National Organization for Rare Disorders - Member 2008 National Organization for Rare Disorders - Member 2009 National Organization for Rare Disorders - Member 2010 National Organization for Rare Disorders - Member 2012 National Organization for Rare Disorders - Member 2013 National Organization for Rare Disorders - Member 2014 National Organization for Rare Disorders - Member 2015 National Organization for Rare Disorders - Member 2016 National Organization for Rare Disorders - Member 2017 National Organization for Rare Disorders - Member 2018 Government Licenses Is your organization licensed by the government? No 10

11 Board & Governance Board Chair Board Chair Karen Hirsch Term Oct 2017 to Oct Board Members Name Ms. Rhonda Byrd Johnson Mr. George Casey Ms. Suzanne DePaolis Dr. Jeffrey Fishbein Psy.D. Dr. Peter Grayson MD Ms. Karen Hirsch Mr. Greg Lesko Mr. Don Nagle Ms. Pamela Pekerman Dr. Jason Springer MD Mr. Jason Wadler Affiliation Community Volunteer Community Volunteer Community Volunteer Board Demographics - Ethnicity African American/Black 0 Asian American/Pacific Islander 0 Caucasian 11 Hispanic/Latino 0 Native American/American Indian 0 Other 0 Board Demographics - Gender Male 7 Female 4 Unspecified 0 Governance Board Term Lengths 3 Board Term Limits 2 Board Meeting Attendance % 88% Written Board Selection Criteria? 11

12 Written Conflict of Interest Policy? Percentage Making Monetary Contributions 100% Percentage Making In-Kind Contributions 100% Constituency Includes Client Representation Number of Full Board Meetings Annually 4 Standing Committees Executive Finance Scientific Advisory Education Marketing CEO Comments Without a doubt, the single biggest challenge for the VF is raising awareness about the disease itself. VF members are encouraged to raise awareness of vasculitis year-round in their local communities. Awareness activities are directed at the general public and the medical community. We hope to make 100% of the medical community aware of vasculitis and to provide them with the knowledge to diagnose and effectively treat the disease. We also hope to make the general public aware of vasculitis so that they may better recognize the symptoms should they appear in their lives. The VF is committed to providing educational resources that will provide a greater understanding of vasculitis in both the medical community and our patients. Greater understanding will ensure patients receive an earlier diagnosis and more effective treatments. Greater understanding of the disease process by patients will enable them to make educated and informed decisions about their treatments. Through the VF website, newsletter, information packets, and one-on-one support, we educate patients about vasculitis. Our materials provide the most current information on vasculitis, its symptoms, medications, and side effects. The VF connects vasculitis patients worldwide with experienced physicians for diagnosis and treatment and connects researchers with patients for critical research. Educational meetings bring together our patients, families, and vasculitis experts. These meetings give patients the opportunity to meet others living with vasculitis often making lifelong connections and friendships. It s a layer of support that is priceless for those living with a rare disease. Because of VF-funded vasculitis research, new and improved treatments and a greater understanding of vasculitis have increased the life expectancy for patients and also improved their quality of life. Additional funding is critical to the Vasculitis Foundation because without it patients will not receive the information they need to successfully manage their disease. We are a partner to their medical team, providing them with support, information, connections, and sometimes just a listening ear. With additional funding, we could reach more patients and more medical professionals. We could hold more educational meetings for patients, and for the doctors that treat them. We could make disease-specific information available in more languages. We could create programs that specifically target the pediatric and elderly populations. With more funding, we could save lives. 12

13 Financials Fiscal Year Fiscal Year Start July 01, 2017 Fiscal Year End June 30, 2018 Projected Revenue $989, Projected Expenses $979, Endowment Value $229, Percentage 0% Detailed Financials Revenue and Expenses Fiscal Year Total Revenue $878,515 $958,934 $903,616 Total Expenses $951,054 $984,832 $836,904 Revenue Sources Fiscal Year Foundation and Corporation $681,279 $709,908 $685,646 Contributions Government Contributions $0 $0 $0 Federal State Local Unspecified $0 $0 $0 Individual Contributions Indirect Public Support $0 $0 $0 Earned Revenue $56,414 $109,893 $67,708 Investment Income, Net of Losses $17,641 $18,822 $92,264 Membership Dues $44,450 $43,107 $47,624 Special Events $74,874 $73,224 $0 Revenue In-Kind $3,857 $3,980 $10,374 Other $0 $0 $0 13

14 Expense Allocation Fiscal Year Program Expense $847,205 $908,411 $729,437 Administration Expense $77,109 $64,071 $83,866 Fundraising Expense $26,740 $12,350 $23,601 Payments to Affiliates Total Revenue/Total Expenses Program Expense/Total Expenses 89% 92% 87% Fundraising Expense/Contributed Revenue 4% 2% 3% Assets and Liabilities Fiscal Year Total Assets $1,150,881 $1,191,428 $1,214,554 Current Assets $165,872 $81,990 $69,917 Long-Term Liabilities $37,713 $31,172 $29,785 Current Liabilities $27,751 $5,820 $5,145 Total Net Assets $1,085,417 $1,154,436 $1,179,624 Short Term Solvency Fiscal Year Current Ratio: Current Assets/Current Liabilities Long Term Solvency Fiscal Year Long-Term Liabilities/Total Assets 3% 3% 2% Top Funding Sources Fiscal Year Top Funding Source & Dollar Amount University of Pennsylvania $144,635 Individual Donor $136,229 Genentech, Inc. $101,251 Second Highest Funding Source & Dollar Genentech, Inc. Individual Donor Individual Donor Amount $102,000 $100,500 $51,679 Third Highest Funding Source & Dollar Amount Individual Donor $50,706 Genentech, Inc. $100,000 Prisim North America $50,000 Capital Campaign Currently in a Capital Campaign? No Goal $0.00 Capital Campaign Anticipated in Next 5 Years? No Organization Comments In 2006, the Vasculitis Foundation changed its name from the Wegener's Granulomatosis Association and expanded its mission to include supporting all vasculitic diseases. This required an extensive review of all programs and a tremendous expansion of our services. The VF relies on dues, donations, fundraising events and a small number of grants to support its efforts. The VF is developing a comprehensive plan for pursuing grants; expanding our planned giving program and developing other fundraising efforts. One of the main challenges for our organization is that many of our members are deeply committed to raising money for research but fail to see the importance of helping fund the Awareness and Support Programs. Vasculitis has no known cause or cure and the treatment options are harsh with many side affects. Our members want better treatments and they want a cure. We need to educate our members about our programs and identify the members who will support them. 14

15 Foundation Comments FYE 6/30/2016, 2015, 2014: Financial data reported using IRS Form 990. Foundation/corporate revenue line item may include contributions from individuals. Created Copyright 2018 Greater Kansas City Community Foundation 15