Million Dollar Bike Ride
The University of Pennsylvania’s Orphan Disease Center (ODC) is hosting their annual Million Dollar Bike Ride (MDBR), and RASopathies Network has the opportunity to raise funds for international RASopathies research!
If you like to bike, or know of people who do, please sign up to support the RASopathies Network Riders!
- In-Person Cyclist Registration:
- $35 – with a commitment to reach a fundraising minimum of $250
- $85 – no commitment to fundraise
- Virtual Cyclist Registration: FREE, and no commitment to fundraise
NOTE: Please choose the RASopathies Network Riders when you register.
Don’t bike? No problem!
You can sign up for the Million Dollar Mile and walk a mile with fellow Rare Disease advocates! Choose that option on the Penn MDBR Registration page.
More on the Penn Website and to register HERE
For more information or questions, contact us at firstname.lastname@example.org.
Ways to Donate
You can donate to RASopathiesNet for our 1:1 match up to $10,000 – which will then be sent to Penn for their 1:1 match which increases the value of your donation 4x, or you can donate through any of Penn’s webpages (RASopathies Network Riders, a friend’s or your own MDBR social fundraising page) for Penn’s 1:1 match.
Donate to RASopathiesNet for your donation-X-4. Click here and follow option . Please write “MDBR” in the memo of your donation
Donate to Penn MDBR’s RASopathies Network Riders’s donate page – click here
Set up a giving page at the MDBR site to raise funds for international RASopathies research. Please contact Cara Borian at CBorian@rasopathiesnet.org for more information on how to set up a giving page
Questions? Contact Cara Borian at CBorian@rasopathiesnet.org.
Click here for parents’ answers to
What do you hope RASopathies research will do for you?
2022 Grant Winner
Congratulations Dr. Jaffré!
$75,431 awarded thanks to our community riders and supporters matched by Penn Orphan Disease Center (OCD)
Congratulations, Vanessa Fear, PhD, The University of Western Australia, for winning the 2021 MDBR RASopathies Research Grant to study “Understanding RASopathies to better inform diagnosis and treatment”
The 2020 Final Count…
Congratulations, Gregor ANDELFINGER, MD PhD, for winning the 2019 MDBR RASopathies Research Grant studying the use of MEK inhibitors for heart problems in RASopathies!
2019 MDBR RASopathies Riders and Volunteers
Congratulations, BRUCE GELB, MD, for winning the 2018 MDBR RASopathies Research Grant!
The 2018 Final Count…
On May 21, 2018
***Thank you 2018 Riders and Volunteers!***
Thank you Water Station Volunteers!
Thank you Ride for Shane Team!
Thank you PJ for organizing all the riders!
Between their butts and the green ribbon is the RASopathiesNet logo!
RASopathiesNet’s Boardmembers Beth Stronach (Secretary) and Lisa Schill (Vice President)
Thank You Everyone!
MILLION DOLLAR BIKE RIDE FUNDRAISER
for RASopathies Research
Thank you 2017 RASopathies MBDR Team!
Past RASopathies Grant Winners
2021: Vanessa Fear, BSc (Hons), PhD, The University of Western Australia, Telethon Kids Institute, $69,885
Understanding RASopathies to better inform diagnosis and treatment
2020: Gregor Andelfinger, MD PhD, CHU Sainte Justine Research Center, Université de Montréal, $59,220
MEK inhibition for RASopathy associated hypertrophic cardiomyopathy
2019: Bruce Gelb, MD, Icahn School of Medicine at Mt. Sinai, NY , $74,830
Advancing A Novel Therapeutic Lead for RASopathies
2018: Kartik Venkatachalam, PhD, McGovern Medical School, University of Texas Science Center at Houston, $47,189
Targeting Endolysosomal Proteins to Treat RASopathies
2017: Philip Stork, MD, Oregon Health Sciences University, $44,000
Are Raf dimers targets for therapeutic intervention in RASopathies?
2016: Giuseppe Zampino, Università Cattolica Sacro Cuore, $53,000
Pain in RASopathies: new investigative techniques and treatments
2015: Maria Kontaridis, PhD, Beth Israel Deaconess Medical Center/Harvard Medical School, $65,000
Pilot study to delineate the cause of gastrointestinal abnormalities in RASopathy disorders using human inducible pluripotent stem cells (iPSCs)