Lafora Disease Sibling Support Group Information | Living with Lafora

Chelsea's Hope Lafora Children Research Fund

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Are you the sibling of someone with Lafora Disease, or do you know somebody who is? Chelsea's Hope is relaunching our sibling support group led by Mariah Merriam.
(c) Copyright Chelsea's Hope Lafora Children Research Fund
Chelsea’s Hope Lafora Children Research Fund is an IRS 501(c)3 non-profit organization. Our mission is to improve the lives of those affected by Lafora Disease and help accelerate the development of treatments. Learn more: chelseashope.org/

Опубликовано:

5 окт 2024

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Комментарии : 8

@sarcasticmanner 9 месяцев назад

Thank you for sharing the story of that Halloween party years ago. You clearly love Chelsea. It’s not your fault. You both were teenagers. You will have a great amount of empathy as a physician based on your history of loving a person with a degenerative condition.

@chelseashopelaforacure 9 месяцев назад

We will pass your kind words on to Mariah. Thank you!

@kandiceblu1 8 месяцев назад

Did you know it was la fora when you invited her to the Halloween?

@chelseashopelaforacure 8 месяцев назад

Thanks for watching! No, they didn't have the Lafora Disease diagnosis before the Halloween party. Anissa was just diagnosed with epilepsy then.

@ashishpatadiya6634 4 месяца назад

Now my brother is struggle in 5 yeras laforra if know new technology any surgery tell me plzz help thank you very much

@chelseashopelaforacure 4 месяца назад

Hi Ashish! So sorry. It is really up to your family and your neurologist. Some families use Metformin or VNS. We can connect you to a Facebook group to ask other families.

@mdnahidseo 8 месяцев назад

U need a professional RU-vid thumbnail designer and video SEO expert /?

@chelseashopelaforacure 8 месяцев назад

Hi, we would be interested! Especially if this is a volunteer offer, since we are such a small organization. Please email christine@chelseashope.org. Thank you!