Meet the Children of
Chelsea’s Hope


In Memoriam

“Those we have held in our arms for a little while, we hold in our hearts forever.”

Important Information for Parents

Letter Lafora

Favorite Links

FDA User Fee Legislation Bringing Hope to Rare Disease Patients
EveryLife Foundation for Rare Diseases Applauds Congress for Including Provision to Empower the FDA to Accelerate Approval of Lifesaving Treatments. [Read more...]

  • Sick Kids Foundation

  • Sick Kids Foundation The Hospital for Sick Children (SickKids) is recognized as one of the world’s foremost paediatric health-care institutions and is Canada’s leading centre dedicated to advancing children’s health through the integration of patient care, research and education.

  • Every Life Foundation

  • Every Life Foundation The Foundation has initiated the CureTheProcess campaign to focus on increasing the predictability of the regulatory process for treatments for rare diseases. The goal is to change the way rare disease treatments are developed and regulated, to transform the drug development process to meet the needs of more patients with very rare diseases.

  • France Lafora

  • France Lafora L’passociation FRANCE-LAFORA vous souhaite la bienvenue sur son site. Cette association a pour objet : vaincre la maladie de LAFORA.

  • Asociacion Lafora Espana

  • Asociacion Lafora Espana Las epilepsias constituyen una de las enfermedades neurol√≥gicas m√°s frecuentes (afectando del 1% al 3% de la poblaci√≥n a la edad de 80 a√Īos). Dentro de las epilepsias se encuentra la Enfermedad de Lafora, una forma de epilepsia miocl√≥nica progresiva que se presenta principalmente en los pa√≠ses del sur de Europa.

  • Italian Association of Lafora

  • A.I.LA. Associazione Italiana Lafora L’Associazione di volontariato “ASSOCIAZIONE ITALIANA LAFORA” A.I.LA., si uniforma ai principi della Legge 266/91 sul volontariato.

  • Becky’s Dream

  • Becky's Dream Meet Becky. She’s an amazing, 21-year-old young woman with the ability to light up a room with her bright eyes and beautiful smile.

  • Caring Bridge: Matthew DeSimas

  • John DeSimas "Welcome to our CaringBridge site. It has been created to keep friends and family updated about Matthew's battle with Lafora Disease. We‚Äôve set this site up as the demands of his illness has kept us from keeping in touch as much as we should."
  • Let Us Beat Lafora

  • MilanaTatjana "We are the Gajic family from Banja Luka in Bosnia and Hercegovina. Our two girls, Tatjana and Milana are suffering from the Lafora disease."

  • Hope for John

  • John Sharp  "Welcome to Hope For John, a website born out of love and inspiration honoring John Sharp, a wonderful young man who recently lost his battle with Lafora Disease."

  • George Mark Children's House

  • George Mark CHildren's House  "First children's hospice house in the U.S. providing medical, emotional and practical support to families with children that have life-threatening and terminal illnesses."

  • Cheryl Bigman Photography

  • Cheryl Bigman Photography  "Cheryl Bigman Photography specializes in on-location portraiture of children and families, personal portraits, and documentary photography. Cheryl focuses on creating artistic images that evoke emotion and showcase relationships." See the Chelsea’s Hope Project under the Portfolio section of Cheryl’s website.