Million Dollar Bike Ride 2024
June 8th, 2024
JOIN team kcnt1 AND RIDE for Research!
The KCNT1 Epilepsy Foundation has been invited to participate in the 11th annual Million Dollar Bike Ride (MDBR) on Saturday, June 8th, in Philadelphia. Whether you’re a serious cyclist or simply someone who cares for our community, we hope you will join us for this fun-filled day! Connect with other rare families and support our Ride for Research! If we raise $30,000 the Orphan Disease Center at UPenn will match it and apply 100% towards KCNT1 research! REGISTER to help fundraise or volunteer! Be sure to check “TEAM KCNT1” !
Last year our teams raised $39,364 which is going to a lab at University College London to work on a gene editing treatment for KCNT1!
WHEN: Saturday, June 8th, 2024 at the University of Pennsylvania
WHERE: Streets of Philadelphia, PA
NOTE: 100% of registration and fundraising money goes towards KCNT1 research!
The KCNT1 Epilepsy Foundation and the University of Pennsylvania Orphan Disease Center (ODC) invite you to participate in the Million Dollar Bike Ride (MDBR). This annual festival brings together families, friends and supporters representing 30 rare disease organizations to raise funds for rare disease research and spread awareness of rare diseases. Team KCNT1 will ride to raise funds to further research on KCNT1-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 ride either 10, 32, or 70 miles starting in the city and across the Greater Philadelphia region. The MDBR has raised over $14 million in eight years to fund research grants. The ODC ensures that 100% of the funds raised go towards these grants, with no overhead taken out. After the event, grant applications will be open to the international scientific community — scientists worldwide will be eligible to apply. We are honored to have been chosen to participate!
Our goal is to raise $30,000 for KCNT1-related research. We need to raise a minimum of $20,000 for a research grant. 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 KCNT1 will need in-person riders 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 but at their own risk.) There will be fun activities and food for the whole family all day long! We hope you will join us!
We will have a booth and an area to gather and a booth to display info about KCNT1. For planning purposes, most riders will complete their ride by 4:00. Lunch vendors arrive between 11-1:00.
Any questions? Please reach out to Sarah at sarah@kcnt1epilepsy.org We thank you for your ongoing support!
Ride For Research
Ride For Research
How to Join Our Team!
1
Registration with Fundraising
*receive a Team KCNT1 t-shirt, MDBR professional-style cycling jersey and an MDBR t-shirt to commemorate the event
$30 and must raise at least $250 by June 10th. Register for TEAM KCNT1.
100% of your registration dollars and fundraising goes towards the KCNT1 research grant.
2
Volunteer
* You still need to register for Team KCNT1. You’ll receive a TEAM KCNT1 t-shirt and an MDBR t-shirt to commemorate the event
Volunteers are needed in the start/finish area, as course marshals, aide station personnel and ride leaders/support. Must be 18 years old to volunteer.
3
Cyclist with optional Fundraising
*Receive a TEAM KCNT1 t-shirt and an MDBR t-shirt to commemorate the event. We ask you to opt-in for fundraising so you appear on our Team page.
Registration Fee:
$65 (before 3/31/23) (25% discount if you register on Rare Disease day 2.29)
$85 (4/1 - 6/3/23)
$100 (Day of event)
100% of your registration dollars go toward Team KCNT1’s research grant
4
Organize a Virtual Event in Your Home town
Register for a Virtual event and create a Team Page! Participants can order a t-shirt from our Bonfire store and find supporters to contribute to our Ride for Research Campaign! (Email info@kcnt1epilepsy.org if you are interested)
FAQS
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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 KCNT1 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. In addition to all the wonderful work they do on our behalf, they also match, dollar for dollar, up to $30,000!
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The Orphan Disease Center has reserved hotel rooms at a discounted rate for the event. https://www.milliondollarbikeride.org/accommodations. Other hotels in the area include The Study and The Inn at Penn. The KCNT1 Epilepsy Foundation has 5 rooms held at the DoubleTre in Cherry Hill. Contact us if you wish to obtain one of these reservations.
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You must be 18 to volunteer.
Yes, you can definitely volunteer and we can use the help! Information about registering as a volunteer can be found here. You will be asked if they want to create a fundraising page, this is entirely up to them, but having a page can never hurt 😊. Also if you do create a page you will appear on our team page as participating.
You can volunteer through pledge it here:
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You must be 16 to ride. You can reserve a bike for the event and pick it up onsite. The lowest rate for the rental is $59
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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
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Although not a requirement, we encourage all team members to opt-in for fundraising during their registration so they are “visible” on our Team page. Plus, you never know who might just offer to ‘sponsor’ you with a donation. We acknowledge the difficulties many are facing and understand not everyone is able to contribute personally.
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The Orphan Disease Center at the University of Pennsylvania hosts the event and you can learn more at their website at
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If you know a donation is going to on the bigger side, think $1,000+ we are encouraging you to use the main giving page for those donations (be sure to note TEAM KCNT1!) or wire the funds directly to us.
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If you prefer to donate directly to the foundation, visit our donation page.