In 2008, NERGG awarded two A. Merrill Henderson Consumer Scholarship Awards. The AMH Award provides modest financial support to families in New England who are affected by genetic conditions and wish to attend conferences or meetings around the country.

At the annual meeting, we take the time to share feedback from the year’s award recipients. Hopefully, stories such as these will impress upon everyone the need for even modest donations to support this worthy cause. Thank you to those of you who have sent in donations this year with your annual meeting registration or your membership renewal.

This year, our first award recipient’s family attended the 24th National Cornelia de Lange Syndrome Foundation Conference held June 26-29th in Lincolnshire, IL. Their post conference summary tells us, “This was truly an unforgettable experience for our family. We met with one of the leading geneticists, Dr. Laird Jackson, who gathered information about Benjamin and his pregnancy, which will aid further research on the causes of CdLS. We also shared copies of Benjamin’s MRI and CAT Scans, which seemed to be of great interest. We met with a developmental pediatrician and a speech therapist that gave us suggestions for Benjamin’s therapy regimen, which we have taken back to his early intervention team to make specific requests for augmentative communication technology and services.

This conference had a great balance of informative sessions on special education, the latest genetic research, behavior issues in adolescents and young adults with CdLS, as well as workshops addressing parents’ emotional needs and opportunities to share with other families. A highlight for everyone was the dinner/dance on Saturday night, where we celebrated these beautiful children and their families. We left feeling empowered to advocate for our son’s needs and educate others about this rare genetic syndrome. The opportunity for families to attend conferences like this one is invaluable, and we are so grateful for your help and for the help you offer to others who find themselves on the unexpected journey of caring for a child with special needs.”

In June, our second award recipient and her daughter attended the 5th US Family Conference on CCHS, Congenital Central Hypoventilation Syndrome in Orlando FL. This is a very rare breathing disorder with about only 600 affected individuals worldwide. Not everyone is as expressive as the first mother and this mother simply writes, “Attending this conference has been of great importance for me and most especially for my daughter affected by CCHS. It was the first time she could meet kids, both younger and older with the same disorder and truly felt included in this “big” family.”

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2006 AMH Summary

2007 AMH Summary