Fundraising Update:September 2010 Chelsea's Hope 2nd Annual Event on September 26, 2010 raised over $42,000 for Lafora Research. This was made possible due to the kindheartedness and dedication of so many supporters. Whether you participated as a donor, an attendee, or a sponsor, your contribution allows for the continued research in finding a cure for Lafora and we are grateful for your participation and generosity. Thus far, Chelsea's Hope and YOUR generosity has generated over a quarter of a million dollars for Lafora Research! THANK YOU!
With these funds, UCLA hired a dedicated Lafora researcher in addition to forwarding the mice colony studies, which have aided the researchers in obtaining recent FDA approval for the IV Gentamycin therapy. In addition we have contributed money to the Lafora research being done at the Hospital for Sick Children in Toronto. $225,000 $152,000 We are thrilled to inform that in the past 18 months since the inception of Chelsea’s Hope nearly $152,000 has been raised for UCLA research. Families and friends from coast to coast that are connected to Chelsea’s Hope are linking hearts and hands to help raise funds for Lafora research. We are so grateful to everyone who donates their time, energy and money in these fundraising efforts. --------------------------------------------- Here is an excerpt from a letter received from UCLA on September 3, 2009: “As you may or may not know, unrestricted funds, such as those that you have provided, are vital to the success of research in the modern era. Traditional state and federal funding requires grant proposals that are based on massive amounts of preliminary information and are, as such, incremental research. With unrestricted funds, one can take a sound hypothesis and a modest amount of pilot data and make a scientific leap, based on insights, minimal pilot data and strong hypotheses. Such leaps advance the field in a non-incremental way and provide breakthroughs that typically are not realized by the more traditional mechanisms. That is, innovative funding for innovative research. It is just this sort of opportunity to which your generous gift is applied. On behalf of the Department of Neurology, thank you again for your generosity and support of research that will lead to improved therapies and, ultimately, a cure for Lafora.” John C. Mazziotta, M.D., Ph.D.
Chair, --------------------------------------------- Northern California Fundraiser $30,000 generated!
May 17, 2009 and perhaps the warmest day of the year in the San Francisco bay area, thus far, marked the First Annual Fundraising Event for Chelsea’s Hope: Lafora Children Research Fund. The Venue, Forli Restaurant in Alamo, California, was standing room only as 125 friends, past and present joined the Gerber Family for a few hours of reconnection, information, auction items, delicious appetizers and wine. Also present were Kim Rice of Seattle and Edmond Richer of Dallas both parents to lafora children connected with Chelsea’s Hope. It was both emotional and amazing that they were able to participate in our first event. Also present and representing UCLA were Dr. Antonio Delgado-Escueta, Dr. Eain Cornford, and Dr. Machado Salas. A surprise visit by Danville’s own “Hero to the Hudson” was Captain “Sully” Sullenberger and his lovely wife Laurie. “The Faces of Lafora” were presented beautifully on 20 x 30 photographic images so tenderly and expertly taken by our own professional photographer, Cheryl Bigman. These haunting images lined the walls of the restaurant, along with family photo collages and excerpts from letters written by parents of these children expressing the devastating heartache and sorrow in watching ones child slowly deteriorate and loose themselves to an incurable disease. A video presentation of lafora, its effects on the brain, and current research being done was represented by Dr. Antonio Delgado-Escueta, Dr. Eain Cornford, and Dr. Machado Salas all of UCLA and renowned experts in the understanding and study of lafora. While the content of their presentation was above the heads of most lay people attending, what was most evident was the impact of this information. To conclude the presentation was an emotional photographic slide show set to beautiful music of our children in the United States that are connected with Chelsea’s Hope. Tears flowed down the cheeks of attendees as they silently watched the images of these innocent children. I know the impact lafora has on the families affected but now from this first public event, I more clearly can see the impact lafora has on all our relationships. Our first event was an overall success, from the emotional content and obvious heartfelt reaction to our cause, to the relationships reconnected, to the many friends who spent hours planning this event, to those who donated services as well as everyone who contributed their hard earned dollars to support research for a cure, we most sincerely thank you. It takes a team of many making small contributions to the greater good to make a difference and with the help of everyone who contributed, nearly $30,000 was generated. THANK YOU! THANK YOU!, THANK YOU! --------------------------------------------- Fundraising Report (March 2009)
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