The CACNA1A Foundation and the Orphan Disease Center (ODC) at the Perelman School of Medicine, University of Pennsylvania, invite you to participate in the Million Dollar Bike Ride (MDBR). This annual festival brings together families, friends, and supporters representing 35 rare disease organizations to raise funds for rare disease research and spread awareness of rare diseases. Team CACNA1A will ride to raise funds to further research on CACNA1A-related disorders in our quest for a cure! We hope you will join us or donate to the cause.

The money raised by each team funds one or more research grants to study their specific disease. Last year, over 850 cyclists and volunteers came together on Penn’s campus to walk 1-mile or ride 10, 32, or 70 miles starting in the city and across the Greater Philadelphia region. In ten years, the MDBR’s 30+ teams have raised over $20 million to fund research grants on the diseases they represent. The ODC ensures that 100% of the funds received go towards these pilot grants. After the event, grant applications will be open to the international scientific community — scientists worldwide will be eligible to apply. (To learn more about our 2023 grantee, click HERE.)

Our goal is to raise at least $30,000 for CACNA1A-related research. All funds raised between $20,000 and $30,000 will receive a dollar-to-dollar match by the Orphan Disease Center to be used for a 1-year pilot grant.

Team CACNA1A will need in-person riders, walkers and volunteers! You must be 16 years or older to participate as a cyclist and 18+ to volunteer. (Children can join you on your bike or ride their bikes at their own risk. If under age 18, the waiver must be signed by a parent/guardian.) There will be fun activities for the whole family all day long! We hope you will join us!

Any questions? Please reach out to Lisa Manaster at Lisa@cacna1a.org or 203-969-6552. We thank you for your ongoing support!

EVENT DETAILS

WHEN: Saturday, June 8th, 2024 at the University of Pennsylvania campus
WHERE: Streets of Philadelphia, PA

HOW TO JOIN OUR TEAM (4 options)

1. Cyclist WITH Fundraising - Receive a Team CACNA1A t-shirt, CACNA1A professional-style cycling jersey, MDBR professional-style cycling jersey, and an MDBR t-shirt to commemorate the event

• $30 and must raise at least $250 by June 8th

2. Cyclist without Fundraising - Receive a TEAM CACNA1A t-shirt and an MDBR t-shirt to commemorate the event
Registration Fee:

• $65 (before 4/1/24)

• $85 (4/2 - 6/7/24)

• $125 (Day of event)

3. Virtual Cyclist - Note that this option is FREE and has no minimum fundraising requirement. However, if you want to join our team and get updates and announcements when registering, DO NOT opt out of fundraising. If you do, you won’t be linked to Team CACNA1A. We encourage Virtual Cyclists to join the MDBR’s Strava Club to track your progress!

4. Volunteer - Receive a TEAM CACNA1A t-shirt and an MDBR t-shirt to commemorate the event. When you register, you will be asked if you’d like to create a fundraising page. This is entirely up to you but having a page can never hurt 😊. You must create a page to appear on our team page as a participant. Volunteer through pledge-it here: (choose TEAM CACNA1A) INFORMATION COMING SOON

5. MILLION DOLLAR MILE - Those not cycling are welcome to walk the Million Dollar Mile! You must be registered to participate. Please note that this is only for walkers, strollers, and those using adaptive mobility equipment. No bicycles or scooters are permitted. All children must be accompanied by an adult. The walk begins at 8 am after all the cyclists take off. The road will be closed to traffic until everyone returns. The cost to register is $15.00, and you will receive a TEAM CACNA1A t-shirt on the day of the event.

FAQS

Q: Why the MDBR?
A: This event is one-of-a-kind and provides opportunities we otherwise would not have—the Penn Orphan Disease Center (ODC) partners with 30+ rare disease organizations through the MDBR. We set the parameters for the CACNA1A grant, but the ODC truly does all the work with no overhead taken out. They distribute the call for proposals worldwide, ensuring we find the absolute best applicants, run the evaluation process and choose the grantee. We are asked to suggest evaluators who are experts in our disease to participate in the process. In addition to all the wonderful work they do on our behalf, they also match, dollar for dollar, up to $30,000!

Q: Where can we stay in Philadelphia for the MDBR?
A: The Orphan Disease Center has reserved rooms at discounted rates at the Homewood Suites, near the starting line. To access room block pricing, please be sure to book your room before the deadline date of 5/7/24. Book Hotels here: Accommodations. Other hotels in the area include the Sheraton Philadelphia University City Hotel, The Inn at Penn, and The Study.

Q: I want to help at the event but do not want to ride a bike. Can I volunteer instead?
A: Yes, you can definitely volunteer, and we can use the help! You can volunteer through pledge-it (choose TEAM CACNA1A) - LINK COMING SOON! As a volunteer, you will receive a TEAM CACNA1A t-shirt and an MDBR t-shirt to commemorate the event. When you register, you will be asked if you’d like to create a fundraising page. This is entirely up to you but having a page can never hurt 😊. If you make a page, you will appear on our team page as a participant.

Q: I want to ride in the MDBR but will not have a bike with me. Are bike rentals available?
A: You can reserve a bike for the event and pick it up onsite. Reserve a bike here: Bike Rental — Million Dollar Bike Ride

Q: How many miles do I need to ride for the event?
A: There are several route options provided, so you can take a casual ride through town along the river, or you can choose a more challenging ride. The routes and maps are available at https://www.milliondollarbikeride.org/routes-and-maps.

Q: What if I choose not to fundraise? Can I still participate?
A: Although not a requirement, we encourage all team members to participate in our fundraising efforts. Know that 100% of your registration/donation goes toward Team CACNA1A’s research grant. However, we acknowledge the difficulties many are facing and understand that not everyone can contribute personally. Your presence is just as significant, especially since we are also using this opportunity to get our community together. We are planning a family gathering on Saturday evening and would love for you to join us! Stay tuned for more info.

Q: I have more questions; where can I learn more about the Million Dollar Bike Ride?
A: The Orphan Disease Center at the University of Pennsylvania hosts the event and you can learn more at their website at https://www.milliondollarbikeride.org.

Q: I have questions about making a donation
A: For more information about donating to TEAM CACNA1A, visit our fundraising page. If you prefer to donate to the University of Pennsylvania on behalf of Team CACNA1A, you can do so on the MDBR’s fundraising page.