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!