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Lafora Disease Sibling Support Group with Mariah Merriam

Interested in a Sibling Support Group?

September 13, 2023/by Christine Kelly

Chelsea’s Hope is delighted to announce the relaunch of our sibling support group, led by Mariah Merriam, to build community between siblings of those with Lafora Disease.

Are you the sibling of someone with Lafora Disease? We encourage you to fill out the interest form and download this flyer with all the details about what to expect from the program.

Image of the Lafora Disease Sibling Support Group Flyer

Mariah founded the group with the intention of providing emotional support and resources for siblings of Lafora Disease patients. She wrote:

“As the sister of two Lafora Disease patients, I understand how isolating grieving a sibling can be. That’s why I founded the sibling support group with Chelsea’s Hope! I hope you will join us in this journey to support one another in our unique experience as siblings.”

Are you interested?

We need to know how many people to expect in the group as we plan. The first step is to please fill out the interest form. Mariah will contact you and add you to a group chat. Next, you can meet her in a low-stress, informal environment before deciding if you’d like to join the Zoom meeting with others. The primary language for the group sessions will be English, but everyone is welcome! We will have a chat with translation capabilities and will do everything we can so language is not a barrier to participation. Also, you can email Mariah with any questions about the group.

Watch a video explaining the Sibling Support Group.

Please note: The program is only for Lafora Disease siblings. You must be age 13+. Parents are welcome to fill out the interest form on behalf of their children.


Fill out the interest form

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https://chelseashope.org/wp-content/uploads/2023/09/Sibling-Support-Group-Announcement-Post.png 1080 1080 Christine Kelly https://chelseashope.org/wp-content/uploads/2022/02/ChelseasHope1.png Christine Kelly2023-09-13 08:21:592024-08-30 07:02:50Interested in a Sibling Support Group?
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About Chelsea’s Hope

Chelsea’s Hope began as a website in the fall of 2007 to share Chelsea Gerber’s story with family and friends. A 501(c)(3) organization since 2009, we have made an impact by raising awareness, connecting families worldwide, funding research, and maintaining hope.

Our mission is to improve the lives of those affected by Lafora disease and help accelerate the development of treatments. [Read More]

View Chelsea’s Hope Newsletter Archive 

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Latest News

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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 nonprofit organization. EIN: 27-1008382

Location imageChelsea’s Hope c/o Dr. Donohue

976 Maywick Dr.

Lexington, KY 40504

info@chelseashope.org

Use ICD-10 code G40.C for Lafora.

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Link to: FACE it Campaign Link to: FACE it Campaign FACE it CampaignThe background is bright yellow. On the left is a child with blue face paint. To the right is another child, who has red, white, and black face paint on, Between the children, the text reads, 'FACE it To make childhood dementia impossible to ignore'. Link to: Announcing ICD-10 Codes for Lafora Disease Link to: Announcing ICD-10 Codes for Lafora Disease New ICD-10 Code G40.C Lafora progressive myoclonus epilepsy Effective October 1, 2023 Providers, please use the new ICD-10 code for Lafora disease.Announcing ICD-10 Codes for Lafora Disease
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