The mission of Chelsea’s Hope is to improve the lives of those affected by Lafora Disease and help accelerate the development of treatments.
Chelsea’s Hope Lafora Children Research Fund is an IRS 501(c)3 non-profit organization. EIN: 27-1008382
Chelsea’s Hope, Post Office Box 348626, Sacramento, CA 95834
Childhood Dementia Webinars
/by Christine KellyOur friends at Childhood Dementia Initiative are hosting three childhood dementia webinars we want to let you know about!
1. Childhood Dementia Introduction
Tuesday, 5th September 2023 from 10:30 – 11:30 pm EST
2. Accessing Emerging Treatments for Childhood Dementia
Thursday, 7th September from 6 – 6:45 pm EST
3. We Don’t Fit Report
Tuesday, 10th October from 9:30 – 10:30 pm EST
Why attend?
Dementia is one of many symptoms of Lafora Disease. These free webinars could benefit families and caregivers, though healthcare providers, researchers, and advocates who attend could better understand childhood dementia.
Please note: Childhood Dementia Initiative is located in Australia, but the events automatically show up in your timezone when you view the session details. We know the last webinar will conflict with our 2023 Lafora Disease Science Symposium, but wanted to pass along the information if you are signed up to get virtual recordings of the Symposium and available on October 10 to learn about CDI’s report.
Ask the Experts: A Q&A Session for Lafora Families
/by Christine KellyYou’re invited…
Keep reading for more details about the Q&A!!
Please join us on Monday, August 28th, 3:00 – 4:30 pm EST on Zoom. Our Science Director, Dr. Kit Donohue, will overview the current therapies in development for Lafora Disease. Afterward, several of our researchers and clinicians will be available to answer any questions you have about current treatments and medications.
So, please come with questions! We would love to have you join us. Please register to receive the Zoom link.
Director of Family Support Announcement
/by Christine KellyWe are thrilled to announce our first Director of Family Support is Niki Markou.
She will be responsible for helping to successfully plan, implement, and continually improve Chelsea’s Hope’s support, registry coordination, and patient community support programs. We created this new role to better serve our mission of improving the lives of those affected by Lafora Disease.
Meet the Team
You might know Niki from the Fighting the Rare documentary or her advocacy work. She is a powerful force in the Lafora Disease community! She has served as Marketing and Communications Director on the Board since she joined Chelsea’s Hope in 2020. Her daughter Angelina is the only patient diagnosed with Lafora Disease in Australia, and Niki frequently shares their story to raise awareness with news media, our partner organizations, and via Lafora Initiative.
She is a passionate advocate for her daughter, other Lafora disease patients, and the rare disease community. We hope you will join us in congratulating Niki on her new position! We are grateful for her commitment to improving the lives of those affected by Lafora and advancing the mission of Chelsea’s Hope.
Rare Genomes Project
/by Christine KellyRare Genomes Project Offers Free Genetic Testing for Rare Disease Families in the U.S.
We know you have likely already experienced a confirmed Lafora disease diagnosis for one of your loved ones or patients. However, please feel free to share this resource with those who might be in need of genetic testing. The diagnostic odyssey for rare disease patients is too long and we are grateful this program will help reduce it.
“The Rare Genomes Project…at the Broad Institute of MIT and Harvard is a patient-driven research study led by genomics experts and clinicians who believe that the latest advances in genomic sequencing are changing medicine and should be accessible to families with rare and undiagnosed conditions.”
We encourage you to view their brochure and flyer! You can find out more information about eligibility and apply for testing on their website.