Monday, March 28, 2011

The National Institute of Health wants to know if you want Down syndrome research funding

The NIH has decided to gather info (Request for Information or RFI) regarding an interest in Ds research, data base and bio bank.  They want to receive responses by April 1, 2011, in order to decide if there is enough interest to move in that direction.  We feel this is clearly a move in the right direction and would love for you to send your email of support.  You can write your own or simply modify the wording in the first sentence....As a friend(uncle, relative, etc) of a child with Down syndrome who has five siblings, .....  

FYI, the majority of individuals with Ds start with Alzheimer-like symptoms in their 40s.  This will dramatically impact the entire family and there is currently a human clinical trial being conducted on just this topic.  Of course the majority of funding is through private donations, so to have the support of NIH in funding Ds research more fairly (currently Ds is the most common genetic chromosomal abnormality, yet it is funded by far the lowest) hopefully more breakthroughs will be found to improve cognition and delay the later loss.

 If you do write an email please send to: and cc:   with subject:  RESPONSE TO NIH DOWN SYNDROME RESEARCH DATABASE & BIOBANK RFI

Please pass along to anyone else who may be willing to send an email. 

Monday, March 21, 2011

World Down Syndrome Day

My daughter Gabriela, age 17, made a seven minute documentary on how her sister Christina aged 9 with Trisomy 21,  brings joy to our family.
View it here, and if you like it, give it your vote for the Goodness Reigns People's Choice Competition.

World Down Syndrome Day

Today is World Down Syndrome Day, a day when advocates and families around the world celebrate those who have Down syndrome and raise awareness about this genetic condition.  March 21st (3/21) was chosen to signify the 3 copies  (instead of the usual 2) of chromosome 21, which are present in individuals with Down syndrome. 

IDSC for Life has put together this beautiful photo montage of children and adults with Down syndrome.  Enjoy!

Monday, March 7, 2011

Interview with Dr Jerome Lejeune's daughter

It was one of the greatest honors of my life to meet Clara Lejeune Gaymard, daughter and biographer of my great hero, Dr Jerome Lejeune. I met with her at the New York Encounter last month.Dr Lejeune is the geneticist who discovered Trisomy 21, the cause of Down syndrome, and he dedicated his life to researching a cure in order to save them from the 92% abortion rate.

Mrs Lejeune Gaymard. is an international businesswoman, travelling the world for GE while raising nine children. Her wonderful book "Life is a Blessing" is now availalble from the National Catholic Bioethics Center e-store.
Here is the interview at the National Catholic Register.