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The 5K Fundraiser and May 16 Meet Up—and Beyond

What would do with a million dollars? Well, just look around at many of the other organizations that have a million dollar or more budget. They distribute publications, fund research, host conferences, create public awareness media, provide scholarships, and so much more. Our first 5K fundraiser will not raise a million dollars, but it will at least allow our dedicated board members to reduce the number of times they dip into their own pockets to fund  expenses. It will allow us to begin working on our first awareness and information publication packets, which can be distributed to new parents, to medical professionals, to educators, and directly to all other individuals who want to know more about sacral agenesis/caudal regression syndrome (SA/CRS).

On May 16, 2015, in Fairfax, Virginia, high schoolers who have voted to donate their 5K fundraiser to will see the fruits of their preparation work as groups of families and friends, racers and walkers, wheelers and pushers, runners and fitness enthusiasts, and anyone else who wants to join in will gather to ready themselves for the 8 AM start. Many local businesses have contributed to the effort. Einstein Bagels will offer food for the hungry runners. T-shirts will be on sale. Local restaurants are considering an “ night,” where part of their proceeds go toward this event. With a registration fee of $20 per runner/walker, the more people who register, the larger the donation for .

Boy using a handcycleFor our participants, there will be some equipment, including a couple of handcycles and a couple of hand trikes.

What may be the largest gathering of SA/CRS individuals and families in history will then gather for a celebration lunch in Springfield, Virginia. For many, this will be the first time they have ever met face to face with another person who has SA/CRS. Babies will be cuddled, some happy tears will be shed, some hugs of encouragement will be shared. Parents will swap stories of their experiences, adults will share their “trade secrets,” and children will make lifelong connections. There will be some fun ice-breaker activities and good food to round out the occasion.

locals will be on hand for some transportation needs. We hope as many families and individuals as possible can come to the event. If you plan to come, don’t forget to RSVP on the Facebook site in the survey post that will remain near the top of the postings. It asks how many people need a hotel, how many people are flying in, and how many people are driving in so that we can get an estimate of the numbers for planning purposes. Currently, with seven people requesting a hotel, we do not have enough families for a group rate, but we have found a good hotel with a reasonable price in the area: Homewood Suites by Hilton Hotel in Springfield. (Read TripAdvisor's review).

For the 5K itself, there is a $20 registration fee to participate. You don’t have to pay that fee to come and cheer from the sidelines or to volunteer at the event itself. However, keep in mind as volunteers that this event is run by the Woodson High School Leadership Club and not by . We are honored to have been chosen as the beneficiary of the funds raised by the students from this event.

Are you wishing you could have an event like this in YOUR local area? Perhaps you can. If you live in a U.S. state where is registered as a nonprofit (see Jahna Berry's article in this newsletter), you can certainly inquire of your local schools to see if there is any opportunity for the school to host an fun run. You can also reach out to other organizations such as local running clubs, local sports stores, local fitness centers, or Boy or Girl Scout troops that need a “community service” activity to see if they might also host such an event. You could also ask a local swim teams about having a swimathon for . The possibilities are endless if you think about all of the organizations in your area. If you have a connection, you have a potential fundraiser. If you see a running or other sport event in your area that sponsors a charity, try networking with the organizers to see how might be hosted by the same organization next year.

If we all work together, we can reach that million dollars and beyond, so that eventually, a diagnosis of SA/CRS is not just a scary and unknown string of long words but a condition that doctors are familiar with; a condition with known, research-supported, cutting-edge treatments; a condition in which the expectation of quality of life is high; and a condition associated with an SA/CRS community of families and individuals with robust supports and connections worldwide.

To sign up for the 5K or Fun Run, go to

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The International Sacral Agenesis/Caudal Regression Association is a 501(c)(3) organization.

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