Chelsea’s Hope began in the fall of 2007 as a means to share our story about our daughter Chelsea and her diagnosis of Lafora disease. Feeling helpless, hopeless and alone is our sorrow we began to realize we could no longer continue to live under the black cloud of despair that was Lafora. We connected with the world's leading experts in Lafora research and soon thereafter, through the power of the internet, began to find other Lafora families and encouraged them to join our cause of creating awareness, connection and raising money for research.
September 2009, Chelsea’s Hope filed for and became an IRS 501(c)3 non-profit organization. All donations are tax deductible to the extent permitted by law. Nonprofit Public Benefit California Corporation EIN: 27-1008382
Co-Founder and Lafora Parent
Board of Directors
K.T. Waxman, DNP, RN
Kim Rice M.D.
The specific purpose of this corporation is to aid and assist the Lafora researchers by raising funds for research, treatment and cures for those affected by Lafora. In addition, our goal is to raise awareness about Lafora and to provide connection and assistance for families in the form of education, emotional and general support.
Read another perspective of Lafora provided by co-founder, Barb Goldsmith. [Read more]
Read words of inspiration provided by Lafora families and friends. [Read more]