Good Things – VCFS Brochure

VCFS Brochure

Velo-Cardio-Facial Syndrome

One of the foundation’s goals was to support the Velo-Cardio-Facial Syndrome Educational Foundation (VCFSEF). This organization provided tremendous to support to Amanda and our family offering medical information and testing along with emotional support and understanding. The foundation wants to be able to reach out to others who had been diagnosed with the syndrome or care for someone with the syndrome. We feel it is important for the information to reach doctors, teachers and others who were not familiar with the syndrome. Our family is convinced that Amanda’s success in school and other activities was possible due to the early intervention recommended by the doctors and therapist at VCFSEF.

After Amanda’s passing, we began working with the VCFSEF board to see how best to help. The VCFSEF board set up a memorial fund in Amanda’s name and the foundation donated $10,000. The VCFSEF board determined that the funds would be used to create an informational brochure regarding the syndrome which will be distributed to pediatrician’s and geneticist’s offices across the United States. Once the brochure, titled Knowledge is Hope, was printed and distributed at conferences and to doctor familiar with the syndrome, the requests began to grow throughout the United States and beyond. As of 2012, the brochure has been translated into 7 different languages and over 500,000 copies have been distributed worldwide. You can visit www.vcfsef.org to donate to the fund or request a brochure.

The foundation hopes that, armed with this information, more children will be diagnosed and receive intervention services earlier to allow their best chance for success. We hope that anyone who works with special needs children, doctors, teachers, therapist, parents, will have access to this information and be able to advocate and support their child.

Amanda’s story is included on the back of the brochure and was detailed in the January 2005 edition of the Educational Foundation’s newsletter.

Links

For more information on VCFS and VCFSEF, please visit their website at www.vcfsef.org.