Take Action

With a patient population as small as ours, every minute volunteered and every penny donated makes a difference. Your action has the power to transform a life, a family, an entire community.

Volunteer with SRF

With the exception of two part-time staff members, the Snyder-Robinson Foundation is 100% volunteer-run. We rely on an international army of volunteers, donors, and supporters to keep our organization sustainable. Whether you have twenty minutes or unlimited hours, please consider volunteering with SRF to effect real change where it counts. We have a range of volunteer opportunities for every skill set that can be done virtually from the comfort of your home.

Join a Volunteer Committee

Volunteer with our existing volunteer committees to help with social outreach to our SRS families, grant writing, and language translations.

Become an SRS Advocate

Advocate for SRS awareness and outreach in your area.

Create Your Own Volunteer Position

Want to help but don't know how? No worries! We will be sure to find a place to fit you in based on your interests and skill set.

Events

Attend an annual event to help raise money and awareness for Snyder-Robinson Syndrome.

Million Dollar Bike Ride

Since 2016, the Snyder-Robinson Foundation has been selected as one of the rare disease organizations to participate in the University of Pennsylvania’s Million Dollar Bike Ride. Every year, our team congregates in Philadelphia to bike to bring awareness to SRS, while raising money that goes directly towards research. Thanks to our supporters and UPenn’s matching contribution program, we’ve raised hundreds of thousands of dollars that’ve gone directly towards finding a cure for SRS. Join Team SRS by participating as a rider, a virtual rider, or by donating to our giving pages.

 
 

SRF Conference

In June, the Snyder-Robinson Foundation held a virtual conference with recorded video presentations and live panel discussions featuring researchers, clinicians, and therapists who have professional experience with SRS.

 
 

Rare Disease Day

Rare Disease Day takes place on the last day of February each year to raise awareness among the public, policymakers, and people in the scientific and medical field about rare diseases like Snyder-Robinson Syndrome. Although our conditions are rare, the number of people living with them are not - roughly 350 million people are affected globally by rare diseases. Rare Disease Day is an opportunity to share our stories and shed light on what it means to live with SRS.

Rare Disease Day

Rare Disease Day takes place on the last day of February each year to raise awareness among the public, policymakers, and people in the scientific and medical field about rare diseases like Snyder-Robinson Syndrome. Although our conditions are rare, the number of people living with them are not – roughly 350 million people are affected globally by rare diseases. Rare Disease Day is an opportunity to share our stories and shed light on what it means to live with SRS.

GivingTuesday

GivingTuesday is an event dedicated to helping others and giving back. For us, it’s an opportunity to raise money and awareness for Snyder-Robinson Syndrome and use the donations to fund research. In 2020, all funds raised through GivingTuesday will go directly to research investigating a prodrug treatment for SRS through Otto Phanstiel and his team in Florida.

The SRF International Conference

In June of 2020, SRF held its first international virtual conference. The conference included recorded video presentations from some of the leading minds in the field of genetics and rare diseases, sharing their research findings and medical expertise as it relates to SRS. We met with researchers, clinicians, and therapists in panel discussions to address some of the greatest issues faced by SRS individuals and their families. You can still register to view the video presentations on the conference website. We look forward to hosting more international conferences in the future.

 
 

Million Dollar Bike Ride

Since 2016, the Snyder-Robinson Foundation has been selected as one of the rare disease organizations to participate in the University of Pennsylvania's Million Dollar Bike Ride. Every year, our team congregates in Philadelphia to bike to bring awareness to SRS, while raising money that goes directly towards research. Thanks to our supporters and UPenn's matching contribution program, we've raised hundreds of thousands of dollars that've gone directly towards finding a cure for SRS. Join Team SRS by participating as a rider, a virtual rider, or by donating to our giving pages.

 
 

Giving Tuesday

Giving Tuesday is an event dedicated to helping others and giving back. For us, it's an opportunity to raise money and awareness for Snyder-Robinson Syndrome and use the donations to fund research. In 2020, all funds raised through GivingTuesday will go directly to research investigating a prodrug treatment for SRS through Otto Phanstiel and his team in Florida.

Membership

Becoming a member is an easy and incredibly useful way to contribute to the lives of those affected by Snyder-Robinson Syndrome, plus it’s free. Membership is incredibly important — it is the most tangible way to show how many people are in support of finding a treatment for SRS. The more members, the greater our chances are at securing grants and funding for research. To join SRF as a member, please fill out and submit the form below.

Become a Member