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
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.
Lafora In The News
/by Riley HawkinsThroughout the last month or so, Chelsea’s Hope and Lafora disease have been in the news quite a few times. Keep reading to learn about and find links to each one!
Articles
Patient Worthy
James Moore
July 28, 2023
In Patient Worthy’s new series about rare disease education, James Moore details Lafora disease in easy-to-understand bullet points. Without a doubt, it is a wonderful resource for learning the basic information and impact of Lafora.
Dementia Alliance International
Niki Markou
July 20, 2023
Dementia Alliance International helps to spread the word of Fighting The Rare, including a brief summary of Niki Markou (A.K.A. our Director of Family Support) and Angelina’s experiences with Lafora.
Eurordis
July 2023
Featured in this article are two Lafora disease patients: Angelina and Robin. In essence, their mothers, Niki Markou and Veronique Gadomski (from France Lafora), tell their stories. While there are similarities between their experiences, it is evident that each Lafora patient and their family has their own unique stories – each and everyone worth learning about!
Patient Worthy
James Moore
August 4, 2023
Our partner, Patient Worthy, gives readers a list of the international scientists that took part in Fighting The Rare, accompanied by a brief explanation of Lafora Disease.
Videos
CheckRare
June 22, 2023
With their spotlight on Fighting The Rare, CheckRare (a rare disease organization) gives an explanation in scientific terms of what causes Lafora disease. Additionally, this article includes a video of Niki Markou and Jordi Duran (Ph.D., Associate Professor at Institut Químic de Sarrià in Barcelona) talking through their roles and aspirations during the creation of Fighting The Rare.
CheckRare
June 23, 2023
In CheckRare’s second Lafora disease-focused article in June, they delve into the common symptoms of Lafora, and hypothesize about a possible treatment. Also highlighted in this article is a Youtube video of Niki Markou and Jordi Duran discussing Lafora disease symptoms and pathophysiology.
Podcast
Vibe Bio
Hosted by Ray Dogum with guest Niki Markou
July 13, 2023
If you’re looking for something to listen to regarding news on Lafora disease, you can check out the latest VibeCast featuring Niki and Dr. Duran! Host Ray Dogum from Vibe Bio asks about Lafora disease, living with symptoms, research, hope for treatments, and the recent Fighting the Rare documentary. It is out now on Youtube and Spotify.
2023 Symposium Registration is Open Now!
/by Christine KellyWe are delighted to announce that the 2023 Symposium registration is open now.
Please join us October 9-10, 2023, in the beautiful and historic city of Bologna.
Lafora disease researchers and clinicians at the Instituto delle Scienze Neurologiche di Bologna IRCCS will host the 8th Annual Lafora Disease Science Symposium at the Relais Bellaria. You can read more details about the city and venue on our webpage!
This conference is ideal for families affected by Lafora disease, researchers, healthcare professionals, and our industry partners. The 2022 Lafora Disease Science Symposium in San Diego was a great time of collaboration, learning, and advancement toward treatments for Lafora. We would love to meet you in Italy!
Register for the 2023 Lafora Disease Science Symposium!
Please note: Chelsea’s Hope is hosting the 2023 Symposium registration until September 15. Please register individually to attend the in-person Symposium. If you can’t make it in person, we encourage you to register and indicate your interest in receiving the recordings after the conference.
The 2023 Symposium registration will close in two months, so don’t wait!