Family Fundraising
2013
Why Raise $$ for FARF?
1 2
Reason #1: To Help by Funding Research
Reason #2: To Support Families
Family Fundraising is KEY!
Family Fundraising
Grants/Other
Investments
94%
2012 Income = $1,646,268
What is Family Fundraising?
Appeal letters
Bequests/Major Gifts/Foundations
Special events
Workplace Giving
Appeal Letters
Relatively easy
Provides opportunity to share your story; raise awareness
Low cost
Highest return on investment
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
Bequests/Major Gifts/Foundations
Planned giving
Local foundations/charitable trusts
High net worth individuals capable of major gifts
FARF can help!
Social Media Nationwide, nonprofit organizations experienced a
13 percent increase in online giving in 2011.
-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.
What Does Fundraising Buy?
• Grants to FA Researchers
• Scientific Meetings
• Physician Outreach/Info Research
• Publications
• Family Meetings
• Support, Education & Referral
Family Support
• Staff, supplies, operations
• Fundraising expenses
Admin. & Fundraising
Since 1989, the Fund has awarded$15
million in research grants: 200 projects
100 researchers
55 institutions
8 countries
Research Grants
Research
1. Identification of microbial and host-derived determinants of oral
carcinogenesis in Fanconi Anemia
Squamous Cell Carcinoma
Flavia R. F. Teles, DDS, MS, DMSc
Forsyth Institute; Boston
2. The effects of loss of Fanconi gene function on the behavior and
therapeutic responses of head and neck cancers
Squamous Cell Carcinoma continued
Ian Mackenzie BDS, PhD
University of London
3 : GS-Nitroxide (JP4-039)/F15 Liposome Oral Radioprotective
Therapy for FA Patients Requiring Chemoradiotherapy for HNSCC
Squamous Cell Carcinoma continued
Joel Greenberger, MD, University of
Pittsburgh School of Medicine
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
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
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
Eunike Velleuer, MD and Ralf Dietrich
Reducing the Burden of Squamous Cell Carcinoma in Fanconi
Anemia
Funded Service Grant
Annual Scientific Symposia
2012 - Denver
2013 – Houston
2014 – Washington, DC
Topic-Specific Science Meetings
2012 - Squamous Cell Carcinoma
2012 – 3rd International FA Gene Therapy Group
2012 – Small Molecules
2013 – Consensus Conference re: FA Guidelines
2013 – 4th International FA Gene Therapy Group
Scientific Meetings
Research
Physician/Researcher Recruitment
Research
Advertisement example:
American Society of Pediatric
Hematology & Oncology
International Conference on Head
and Neck Cancer
American Society of Hematology
Clinical Publications
FA Guidelines for Diagnosis and Management
next version: 2014
FA Courier
International Treatment & Testing Resource
Guide
Family Support
Family Newsletter
International Family Directory
International Resource Guide
Family Handbook
FA Courier
Donor Newsletter
Brochures
Publications Family
Support
2011 – Portland, Ore.
2012 – Austin, TX
2014 - TBA
Adult Meetings Family
Support
Meetings for Adults with FA feature clinical
presentations, support groups and social events.
Every 18 months.
Family Meetings
2013 Camp Sunshine
Clinical presentations
Research opportunities
Support groups
Family fun!
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
Family Support
Fundraising Support
FARF provides:
Personalized
brochures
Custom flyers
Admin. & Fundraising
FARF provides:
Holiday letter
editing
Copying/postage/
mailing
Fundraising Support Admin. &
Fundraising
FARF provides:
Fundraising
PowerPoint/Video
presentation
Talking points
about FA/FARF
Simple FAQ/fact
sheet about FA
Fundraising Support Admin. &
Fundraising
Fundraising PowerPoint/Video
FARF provides:
Accounting of
names/amounts
Thank you
letters/tax receipts
to donors
Fundraising Support Admin. &
Fundraising
After your event or fundraising letter campaign:
To Those of You Who Fundraise…
You make FARF’s work possible.
Thank you!
To Those of You Who Haven’t Yet… We need you!
And we can
help you be
successful!