Tag Archives: Fund Development

Lottery Winning Landlord Directs Rent to Research

News iconThis is a great story from the Courier in Scotland. Gillian Bayford, a landlord who won the lottery, is sharing her good fortune. In addition to supporting the remodeling of his home to support Blake McMillan’s special needs, she is directing all the rent paid by Blake’s family to support research on MECP2 duplication syndrome, the condition which affects Blake. For more info, see the original story in the Courier.

It is great to see creative ways that people are finding to support this cause.

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Educating Students With Severe and Multiple Disabilities

Orelove-1b…Time for Some Shameless Self-Promotion

I am really happy to announce that the 5th edition of Educating Students With Severe and Multiple Disabilities is finally on the brink of publication. In addition, to the 4  previous English editions, an Arabic and Korean Edition have also been published over the three decades since the first (1987) edition (pictured below)

51mImEM3Z7L._SX331_BO1,204,203,200_Through all of those years I have been pretty passive about trying to promote sales of these books. This hasn’t been due to humility on my part; I think I have just been a little too socially awkward and insecure to make a sales pitch. Continue reading

MECP2 Duplication is Not So Rare as Once Thought

NEW3Although MECP2 Duplication Syndrome (or Xq28 Duplication) is correctly identified as a rare condition, available research suggests that it is not as rare as we once thought. For example, Japanese researchers published a 2014 study in Human Genome Variation that described from results of 1,250 patients with intellectual disabilities who had not received specific diagnoses. The researchers performed advance genetic testing on these 1,250 patients and found probable genetic causes for 17% of these individuals. Many different genetic conditions were found among these 17% of patients. However, one condition was found more frequently than any other. That condition was Xq28 duplication with duplication of the MECP2 gene. This suggests that MECP2 Duplication Syndrome is not nearly as rare as once believed and that many cases continue to go diagnosed.

In the words of the researchers: Continue reading

With Gratitude

thanksSpecial thanks on behalf of  families of individuals with MECP2 Duplication Syndrome to my colleagues Fred Orelove and Donna Gilles who have decided to assign 100% of the royalties of our forthcoming book, Educating Children with Severe and Multiple Disabilities  to support research efforts to find new and better treatments. Royalties will be paid to the MECP2 Duplication Syndrome Fund at the Rett Syndrome Research Trust.

Fred and Donna have been leaders in the field of developmental disabilities for decades. Continue reading