Tips to Raise Money for your Mitochondrial Medicine Symposium Trip!
June 2020 will be here before you know it! The cost of one family member attending the symposium will be the cost of registration (approx. $115, which covers nearly all meals), two nights in a hotel (approx. $190 per night) and ground or air transportation. It can seem like a huge financial hurdle for some – but, there are ways to raise funds! Here is a formula for raising $350 in just a week:
Develop a “Phoenix, AZ or Bust” pledge sheet. Then…
- Day 1: Sponsor yourself. Pay the fundraising kitty $25.
- Day 2: Ask five friends to contribute $20.
- Day 3: Ask two relatives to sponsor you for $25.
- Day 4: Ask five co-workers to sponsor you for $10.
- Day 5: Ask five neighbors to give $10.
- Day 6: Ask your company for a contribution of $25.
- Day 7: Ask two businesses you frequent (such as your doctor, dentist, dry cleaner) for $25.
Most people are happy to give when they are asked – especially if it will help you as you care for your loved one. People want to do something positive for you!
Note: The IRS will allow parents to deduct some of the costs, such as registration and transportation costs, that are associated with attending medical meetings related to their children’s health conditions. See IRS Bulletin 2000-9 (May 8, 2000) for more information.
- Ask your church, synagogue, family, friends, social groups, or your employer to assist you in fundraising to help defray your costs – and increase awareness at the same time!
- Put the symposium on a wish list and have people contribute toward your trip. Sometimes people are even willing to donate frequent flyer miles.
- Funds can many times be found by contacting your local United Way, the March of Dimes, Muscular Dystrophy Association, Easter Seals, Kiwanis, Rotary or Lions Club.
Local Government & Non-Profit Resources
NORD launched a first-of-its-kind assistance program aimed at providing caregivers of rare disease patients a much-needed respite. NORD designed this program for caregivers because we know that caring for a loved one is a generous gift that demands copious amounts of time, attention, patience and dedication. This program was established with a donation in honor of former Retrophin CEO Steve Aselage’s retirement and will continue to accept additional donations to ensure that it is sustained for years to come. Learn more.
If you plan to contact state/local resources for financial support, you will need to get started as soon as possible. Many of these agencies have early deadlines for the upcoming year.
Use GoodSearch.com to search the web for available funds. (Don’t forget to use the UMDF’s code: charityid=806412)
Some keywords to try:
- ARC of (your state)
- legal aide
- financial assistance
- conference assistance
- conference stipend
- disability assistance
- disability stipend
- family assistance
- disability resources
- or any other creative combination of words!
And don’t forget to put the name of your state in the search!
Different states have different names for programs, so you may need to do some research for programs in your area. Applications can usually be made to:
- Your state’s Early Intervention Office
- Department of Public Welfare Disabilities Office
- Commission on Disability
- Georgia Governor’s Council on Developmental Disabilities (gcdd.org)
- Medicare Waiver Program
- Parenting Education Network (IEP or FSP program)
- New York Economic Opportunity
- Illinois Family Assistance for Children with Developmental Disabilities
- The ARC of Illinois, Consumer Involvement Program-Consumer Stipend Funds
- Utah Governors Council for People with Disabilities
- Northwest Missouri Conference Assistance Program
- Florida Family Café: Consumers and Families Leadership and Development Assistance Program (Apply Early!)
- Consumer and Family Participation Fund – Virginia/D.C. area