About

abbys-run-2013-abby

Abby’s Run for Dandy-Walker Syndrome, previously known as the Dallas Fun Run for Dandy-Walker, is ready for our 3rd annual fundraiser to support the Dandy-Walker Alliance 501(c)(3). The event includes a 5K run timed by RunOn, a 1-Mile fun run/walk, and Family Fun Fest on April 12, 2014 in Frisco, Texas.

The first annual run/walk, the Dallas Fun Run for Dandy-Walker benefiting the Dandy-Walker Alliance, took place on May 26, 2012. It was incredible! The support received made a difference in the lives of these children in ways you may never know, and lifted the awareness about Dandy-Walker Syndrome to a whole new level. Over 200 registrants/volunteers participated and $13,000 was raised in only the first year!

Under our new name, Abby’s Run for Dandy-Walker Syndrome, we had a successful 2nd year event at Frisco Square on April 6, 2013.  With the help of our awesome volunteers, over 200+ participants enjoyed the race & fun fest!  We raised over $19,000 with the wonderful support of our generous sponsors, donators, and participants!

Funding has helped support DNA research at a leading children’s hospital as well as a national research institute. This has increased our understanding of the causes of DWS, improved diagnosis, and may lead to new therapeutic options, but much research remains. More to come in the years ahead! With your help, we can keep moving forward!!  And we are moving forward…see THIS BLOG POST for huge breaking news in the journey of DW research.  Thank you all!!

Beneficiary:  The Dandy-Walker Alliance

It is a sigh of relief for us, as well as so many other families, to find others that can help explain Dandy-Walker Syndrome, provide guidance, and support through this journey in the special needs world.

Dandy-Walker AllianceThe Dandy-Walker Alliance is a 501 (c)(3) non-profit organization comprised of individuals directly and indirectly affected by DWS who share a collective interest in educational, informational activities and supporting non-partisan research to increase public awareness of the congenital birth defect Dandy-Walker Syndrome.

The DWA supports legislation that will help expedite their goals and raises money to support research efforts to find causes, better treatment options, and a cure for Dandy-Walker Syndrome.

Dandy-Walker Alliance programs include a helpline, mentoring parents, advocacy for Dandy-Walker Syndrome awareness, and educational material development. They also offer a variety of support programs tailored for individuals and their families seeking information about Dandy-Walker Syndrome.

Please visit www.dandy-walker.org for further information about the Dandy-Walker Alliance.

Many families are affected by Dandy-Walker Syndrome right here in Texas.

AbbyThis is our vibrant little Abby.  Midway through our pregnancy, we were given the option to terminate due to Abby’s conditions which includes Dandy-Walker Syndrome. This little girl has every chance to live a happy, fulfilling life. (Read about Abby…)

More education is greatly needed for parents & physicians so every Dandy-Walker kiddo has a chance. Please learn & share to help more children, like Abby, light the lives of so many as she does today!