Lafora update.

Dear friends,

As the year comes to a close I’d like to look forward to the year ahead with great promise. We, Chelsea’s Hope, have accomplished so much in terms of raising money for research being done at UCLA, while some of you have raised great amounts of money that was sent to Toronto for the research being done by Dr. Berge Minassian. Our goal is the same, to find a cure for Lafora, to relieve our children of the fate that lies ahead if we do not!

Our hope, Chelsea’s Hope: Lafora Children Research Fund, is HOPE for all our children. We hope you all feel a part of the organization that we have formed, created and shared. It is with love, devotion and a greater sense of community that we originally began Chelsea’s Hope and with that sense of devotion and urgency to support research being done to further the Lafora understanding and research development.

As of October 2009, we have successfully incorporated and filed for our 501(c)3, non-profit standing. We have developed articles of incorporation, bylaws and a Board of Directors to help guide us. From this point on, we will be able to support any/all Lafora research being done, generate corporate sponsorships, apply for grants, garner corporate matching charitable donations and open the door for so many other possibilities in terms of raising the much needed funds to successfully win this battle over Lafora.

I have attached a personal letter from Dr. Antonio Delgado- Escueta that I thought would interest you, after all “We are all Chelsea’s Hope”, as well as the most recent UCLA Research Update for 2010. We expect to receive the updates from Toronto soon and will share those with you when they are received. We will be posting this to the website as well as sending out an announcement notice of our new standing to all those who have generously donated to the research into Lafora disease.

Our best wishes to you and your families as we look to 2010 with the promise of miracles.

With Hope,

Linda and Barb

“Alone we can do so little, together we can do so much.” Helen Keller

Note the above is from Linda Gerber. I have tried to copy the documents but I can't copy PDFs for some reason.