Hold onto your hats because this is BIG! I have been waiting for a long time to make this announcement and it's like a gift that the timing should land on this special day. Theresa Strong has just released the newly approved projects for 2008 and when you add these projects to the ones we have funded in the past,



$ 1,000,000 DOLLARS


SINCE 2003!!!

That's right! We are one million dollars closer to the answers we need, one million dollars closer to securing the future for the children we love.

As you read the list below of this year's projects, be reminded that FPWR has truly energized the field of PWS research. We have brought in new researchers and supported experts already in the field. We are supporting work in a wide variety of areas related to PWS and intend to improve the lives of individuals of all ages who have been diagnosed with PWS, and their families. Our first million will go a long way toward doing just that!

Thanks, again, for everything you have done to get us to this point. The fundraisers that you have held, the money you have given, the connections with donors that you have made, all have worked together to bring us to this moment. The work of FPWR is nothing less than a miracle and I thank each and every one of you for the parts you have played. I look forward to all the work that we will do from here on out and know that the days ahead are filled with so many good things.

God bless all of you, and especially our dear children that we love so much. Thank you for giving me the opportunity to serve you in this position, and for the love and encouragement that you have so generously shared.

with much love,


Here are the newly funded projects for 2008. You can also read the full lay-abstracts on the website at

Behavioral treatment of obsessive-compulsive symptoms in youth with Prader-Willi syndrome: A pilot project. Dr E Storch, University of South Florida ($49,855). Those with PWS very often have symptoms of obsessive-compulsive disorder, which can significantly impact quality of life. Behavioral treatment of OC symptoms can be very effective in the general population, but this approach has not been adapted for PWS. Dr. Storch will be developing and testing a treatment protocol to reduce OC symptoms in youth with PWS.

An improved mouse model of Prader-Willi syndrome. Dr. J Resnick, University of Florida ($49,322). Dr. Resnick's group will develop a mouse model that has a 'conditional knockout' of the PWS region. Dr. Resnick will use the new model to bypass the early failure to thrive stage, which is usually lethal in PWS mice, and help them survive the newborn period, and perhaps allowing them to develop the obesity common in PWS. Such a mouse will also be of excellent general use in the PWS research community as it will allow the PWS deletion to be regulated at certain times in development and/or in certain tissues only.

R-loop structures maintain epigenetic imprints at the Prader-Willi imprinting center. Dr F Chedin, Univ California Davis ($49,750) Dr. Chedin studies DNA structure and has found interesting features in the DNA at the PWS critical region. He believes these unusual structural features allow the PWS region on the paternal chromosome to remain active while the maternal chromosome is silenced. His studies will lead to a better understanding of the mechanism of imprinting, and may shed new light on how to regulate that process.

The risk of early onset Alzheimer's disease in Prader-Willi syndrome. Prof A Holland, University of Cambridge. ($28,136). A recent small study on adults who had died with PWS found signs of Alzheimers disease (AD) in brain tissue. Dr Holland and colleagues will interview families and caregivers of adults with PWS who are over 40 to determine if those will PWS are at increased risk for developing AD.

Exploring the potential mitochondrial dysfunction in mouse models of Prader-Willi syndrome. Dr V Kimonis, University of California, Irvine ($50,000) There is some suggestion that individuals with PWS may have abnormalities in the function of mitochondria, the 'powerhouse' of the cell. Dr. Kimonis will use a variety of sophisticated methods to determine if the mitochondria are properly functioning in mouse models of PWS.

Activation of the maternal allele at the PWS/AS domain as a potential therapeutic approach (year 2). Dr. A Razin, Hebrew University Medical School ($50,000) We will provide a second year of support to Drs. Razin and Shemer, who are investigating a protein thought to be involved in 'turning off' the maternal chromosome 15 in PWS. By targeting this protein, these investigators hope to develop a therapeutic strategy to allow expression of genes from the PWS region of the maternal chromosome; an approach that should be applicable to all genetic types of PWS.

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