Family Fundraising 2013

Transcription

1 Family Fundraising 2013

2 Why Raise $$ for FARF? 1 2

3 Reason #1: To Help by Funding Research

4 Reason #2: To Support Families

5 Family Fundraising is KEY! 2012 Income = $1,646,268 Family Fundraising Grants/Other 94% Investments

6 What is Family Fundraising? Appeal letters Special events Bequests/Major Gifts/Foundations Workplace Giving

7 Appeal Letters Relatively easy Provides opportunity to share your story; raise awareness Low cost Highest return on investment

8 Special Events International Fanconi Anemia Day: May 1 Chamber music concert and wine auction Play for FA game tournament Family Fun Day Golf Tournaments Lucky Duck Swing and Soiree Peg Padden Sigma Pi Open KATA Foundation Others Kick FA 5 K Run/Walks Garage Sale Car Washes

9 Bequests/Major Gifts/Foundations Planned giving Local foundations/charitable trusts High net worth individuals capable of major gifts FARF can help!

10 Social Media Nationwide, nonprofit organizations experienced a 13 percent increase in online giving in Blackbaud, 2012 For the past two years, FARF s online giving has held steady at 8.5%. New this year: FARF has a direct way to donate online, a model that has yielded a 5% increase in online giving for other organizations.

11 What Does Fundraising Buy? Research Grants to FA Researchers Scientific Meetings Physician Outreach/Info Family Support Publications Family Meetings Support, Education & Referral Admin. & Fundraising Staff, supplies, operations Fundraising expenses

12 Research Research Grants Since 1989, the Fund has awarded$15 million in research grants: 200 projects 100 researchers 55 institutions 8 countries

13 Squamous Cell Carcinoma 1. Identification of microbial and host-derived determinants of oral carcinogenesis in Fanconi Anemia Flavia R. F. Teles, DDS, MS, DMSc Forsyth Institute; Boston

14 Squamous Cell Carcinoma continued 2. The effects of loss of Fanconi gene function on the behavior and therapeutic responses of head and neck cancers Ian Mackenzie BDS, PhD University of London

15 Squamous Cell Carcinoma continued 3 : GS-Nitroxide (JP4-039)/F15 Liposome Oral Radioprotective Therapy for FA Patients Requiring Chemoradiotherapy for HNSCC Joel Greenberger, MD, University of Pittsburgh School of Medicine

16 Biochemistry Johannes Walter, PhD, Harvard Medical School, Boston Fanconi Anemia and the Repair of DNA Protein Cross-Links Dong Zhang, PhD, The University of South Dakota, Sioux Falls, S.D. Investigate the Molecular Mechanisms of How FANCJ Regulates Centrosome Cycle

17 Human Papilloma Virus (HPV) Rachel Katzenellenbogen, MD, Seattle Children s Research Institute, Seattle and Parinda Mehta, MD, Cincinnati Children s Hospital and Medical Center, Cincinnati HPV Infection and Serology in Fanconi Anemia Patients

18 Transplants Farid Boulad, MD, Memorial Sloan-Kettering Cancer Center, New York Multicenter Pilot Trial of HSCT Lacking a Genotype Identical Donor Memorial Sloan Kettering Children s Hospital of Wisconsin Cincinnati Children s Hospital Boston Children s Hospital Fred Hutchinson Cancer Research Center

19 Funded Service Grant Eunike Velleuer, MD and Ralf Dietrich Reducing the Burden of Squamous Cell Carcinoma in Fanconi Anemia

20 Research Scientific Meetings Annual Scientific Symposia Denver 2013 Houston 2014 Washington, DC Topic-Specific Science Meetings Squamous Cell Carcinoma rd International FA Gene Therapy Group 2012 Small Molecules 2013 Consensus Conference re: FA Guidelines th International FA Gene Therapy Group

21 Research Physician/Researcher Recruitment Advertisement example: American Society of Pediatric Hematology & Oncology International Conference on Head and Neck Cancer American Society of Hematology

22 Family Support Clinical Publications FA Guidelines for Diagnosis and Management next version: 2014 FA Courier International Treatment & Testing Resource Guide

23 Family Support Publications Family Newsletter International Family Directory International Resource Guide Family Handbook FA Courier Donor Newsletter Brochures

24 Family Support Adult Meetings Meetings for Adults with FA feature clinical presentations, support groups and social events. Every 18 months Portland, Ore Austin, TX TBA

25 Family Support Family Meetings 2013 Camp Sunshine Clinical presentations Research opportunities Support groups Family fun!

26 Family Support Support, Education & Referral New patient inquiries and assistance Involvement with current families E-Group and Facebook facilitation Inquiries from physicians and social workers Connecting new families with established FARF families Coordinate tissue sample donations with NDRI & OHSU Resource referrals

27 Admin. & Fundraising Fundraising Support FARF provides: Personalized brochures Custom flyers

28 Admin. & Fundraising Fundraising Support FARF provides: Holiday letter editing Copying/postage/ mailing

29 Admin. & Fundraising Fundraising Support Fundraising PowerPoint/Video FARF provides: Fundraising PowerPoint/Video presentation Talking points about FA/FARF Simple FAQ/fact sheet about FA

30 Admin. & Fundraising Fundraising Support After your event or fundraising letter campaign: FARF provides: Accounting of names/amounts Thank you letters/tax receipts to donors

31 To Those of You Who Fundraise You make FARF s work possible. Thank you!

32 To Those of You Who Haven t Yet We need you! And we can help you be successful!

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