Schinzel-Giedion Syndrome Foundation

Providing support for families caring for a child with Schinzel-Giedion Syndrome.

REGISTRATION FOR THE 2024 11TH ANNUAL MILLION DOLLAR BIKE RIDE (MDBR) IS OPEN!

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Join Our Team

The SGS Foundation is partnering with the SETBP1 Society for the first time to participate in the 2024 Million Dollar Bike Ride sponsored by the University of Pennsylvania’s Orphan Disease Center. Our combined team is called SETBP1Strong and the event will take place in Philadelphia, USA on Saturday, June 8th.

The Million Dollar Bike Ride brings together rare disease teams, each representing a specific rare disease. The money raised by each team funds one or more research grants to study that specific disease. The Million Dollar Bike Ride brings over 750 cyclists and volunteers to Penn’s campus to ride either 13, 34, or 72 miles starting in the city and ranging across the Greater Philadelphia region. In eight years, the MDBR’s 30+ teams have raised over $15 million to fund research grants on the diseases they represent. The ODC ensures that 100% of the funds raised go towards these pilot grants, and every $1 raised over $20,000 is matched by the ODC, up to $30,000! After the event, grant applications will be open to the international scientific community — scientists from around the world will be eligible to apply.

This is a unique opportunity for the entire SETBP1 community (families affected by Schinzel-Giedion Syndrome, SETBP1 haploinsufficiency disorder (SETBP1-HD), and SETBP1-related disorders) to work together. It is also an extraordinary opportunity to join with other rare disease patients and organizations.

Our goal for this year is to raise $50,000 for Schinzel-Giedion Syndrome and SETBP1-HD research. We need to raise a minimum of $20,000 to receive matching funds from the ODC for a research grant. All funds raised between $20,000 and $30,000 will be doubled by the Orphan Disease Center, which is AMAZING!! If we reach our goal of $50,000, we will have $80,000 to dedicate to a combined research grant for Schinzel-Giedion Syndrome and SETBP1-HD.

Our SETBP1Strong Team will also need at least 15 in-person riders and/or volunteers! Registered riders need to be 16+ years old to ride or 18+ years old to volunteer at the event!

EVENT DETAILS

WHEN: Saturday, June 8th, 2024
WHERE: Philadelphia, PA 
You can ride in-person or virtually so you can show your support and ride anywhere you choose.
NOTE: 100% of fundraising will go towards SETBP1 research (for SETBP1 haploinsufficiency and Schinzel-Giedion Syndrome)!  All fundraising is to be completed by June 8, 2024.

HOW TO JOIN OUR TEAM

Options
Pick your preferred participation option:

  1. 1.Virtual Cyclist with Fundraiser
  2. 2.In-Person Cyclist with Fundraising
  3. 3.In-person Walker with Fundraising
  4. 4.In-person Volunteer with/without Fundraising
  5. 5.In-person Cyclist without Fundraising

DETAILED PARTICIPATION INFORMATION

1. Virtual Cyclist with Fundraising:

No Registration Fee, but a donation of $10 or more is requested.
Step 1: Register
Step 2: Set up Fundraising Page –You can view a sample page at https://charity.pledgeit.org/f/IqxF0AEKJg
Step 3: Share your Fundraising Page

2. In-person Cyclist with Fundraising: 

Registration is easy! The registration fee is $30 and requires a minimum fundraising commitment of $250. It is expected that the minimum will be met by June 8th.

  1. Step 1: Register – Get a free SETBP1Strong Team t-shirt, MDBR t-shirt & MDBR jersey (early registration only for jersey – April 1, 2024)
  2. Step 2: Set up Fundraising Page – You can view a sample page at https://charity.pledgeit.org/f/IqxF0AEKJg
  3. Step 3: Share your Fundraising Page!

3. In-person Walker with Fundraising: 

Registration is easy! The registration fee is $15 and we welcome you to help fundraise. Walkers ages 16+ count towards our SETBP1Strong in-person participant count.

    1. Step 1: Register – Get a free SETBP1Strong Team t-shirt if you commit to raising $250 or more!
    2. Step 2: Set up Fundraising Page – You can view a sample page at https://charity.pledgeit.org/f/IqxF0AEKJg
    3. Step 3: Share your Fundraising Page

4. In-Person Volunteer with/without Fundraising: 

No registration fee. Volunteers ages 18+ count towards our SETBP1Strong in-person participant count.

  1. Step 1: Register – Get a free SETBP1Strong Team t-shirt if you commit to raising $250 or more!
  2. Step 2: Set up Fundraising Page if you plan to fundraise – You can view a sample page at https://charity.pledgeit.org/f/IqxF0AEKJg
  3. Step 3: Share your Fundraising Page!

5. In-Person Cyclist without Fundraising:

    1.  

    Early Bird Registration Fee: $65
    After April 1st: $80
    Day of Ride: $100

Step 1: Register

FAQ (Frequently Asked Questions)

  1. Q: Where can we stay in Philadelphia for the MDBR?
    A: The Orphan Disease Center has reserved some hotel rooms at a discounted rate for the event. The details will be available soon at https://www.milliondollarbikeride.org/accommodations.

    Q: I want to help out at the event but I 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 learn more about registering as a volunteer (ensure to select that you are volunteering for the SETBP1Strong team) and what options are available at https://www.milliondollarbikeride.org/volunteer.

    Q: I want to ride in the MDBR but I will not have a bike with me, what do I do?
    A: You can reserve a bike for the event. You can learn more about this option at https://www.milliondollarbikeride.org/bike-rental.

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

    Q: I have more questions, where can I find out 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.