Cure IBM is delighted to announce that we have been selected to participate in the Million Dollar Bike Ride in Philadelphia, PA, on Saturday, June 8, 2019! Sponsored by the Orphan Disease Center at the University of Pennsylvania, this annual festival brings together rare disease families and supporters to publicize rare diseases and raise funds for research. For the first time, inclusion body myositis will have a team in this event.
The Million Dollar Bike Ride includes rare disease teams from across the United States and Canada. Each team represents a specific rare disease. The money raised by the team funds a research grant to study that disease. After the event, grant applications will be open to the international scientific community — scientists from around the world will be eligible.
This is a special opportunity for the worldwide inclusion body myositis community to work together. It is also an extraordinary opportunity to join with other rare disease patients and organizations.
We need to raise a minimum of $20,000 for a research grant. All funds between $20,000 and $30,000 will be doubled by the Orphan Disease Center! Matching funds are not available over $30,000, but there is no limit to the money raised. For example, if we raise $40,000, the Orphan Disease Center will add $30,000, and a total of $70,000 will be available to fund a research grant. All donations will be temporarily held by the Orphan Disease Center, and 100% of the money will be distributed in the research grant(s).
The Cure IBM team needs riders! You do not need to be an elite cyclist to participate; if you can ride 13 miles, you can join the team. Riders will select one of three courses: 13 miles, 34 miles, or 72 miles. All courses start and end at the same location in Philadelphia. Online registration for riders will be available starting in January. Riders are encouraged to register as team fundraisers, although a non-fundraising option will also be available.
Volunteers will also be needed to help with staffing at the start/finish line and the water stations, along with other tasks.
It’s too early to sign up, but it is not too early to start planning. Do you have a cycling friend or relative who lives in Pennsylvania, or nearby in Maryland, Delaware, New Jersey, or New York? Could you plan a spring fundraiser in your town to raise funds for the team? Start thinking about the possibilities.
Mark June 8, 2019 on your calendar and plan a Philadelphia vacation! See the Liberty Bell and tour Independence Hall. Snap a photo of the Rocky Statue and the “Rocky Steps” in front of the Philadelphia Museum of Art. Visit America’s oldest farmers market, tour one of several world-class museums on the Benjamin Franklin Parkway, or simply enjoy the quiet beauty of the Schuylkill River.
If you live in or near Philadelphia, your local information could be very useful. We’d also like to speak with IBM patients in the Philadelphia area who would be willing to share their story with the media. Please write Cure IBM by clicking “Contact Us.” If you are using a computer, the “Contact Us” button is located near the top right of the screen in the blue bar. On a phone or mobile device, use the drop-down menu located near the top of the screen.
EVERYONE CAN HELP! Although we’d love to see you in Philadelphia, if you can’t come in person, you can still help by spreading the word about the event, fundraising for the team, and donating.
The Cure IBM website will be posting periodic updates about registration, tips for fundraising, and general event information.
PLEASE SHARE THE NEWS!
WE NEED YOU!
JOIN THE TEAM!
by Kevin Dooley, MD
December 18, 2018