Linda and Chelsea Gerber
If someone you love is newly diagnosed with Lafora disease, you are in the right place. Chelsea’s Hope is a worldwide team of Lafora disease family and friends dedicated to finding a cure. We have been where you are now, and we understand the emotions you are experiencing.
Chelsea’s Hope wants to connect with you and answer any questions you have. You have a Lafora disease family to support you.
It is important to keep our community connected and our families informed.
The first step is to sign the informed consent form, so if you are interested, please email registry@lafora.es.
Why get genetic testing for Lafora disease? Should siblings get tested?
A diagnosis of Lafora disease is confirmed by testing for mutations in the EMP2A or EMP2B genes. Siblings who share both biological parents with a child with Lafora disease may be at risk, families should consider testing and discuss with their doctor on an individual basis. Siblings that only share one parent are unlikely to be at risk and usually do not require testing. Testing siblings even if they do not have symptoms is important because there are treatments available that can delay symptom onset and prevent the progression of the disease.
Why participate in a Lafora disease registry?
The Lafora Disease Registry aims to have a database of children living with Lafora disease, know their symptoms, stage, and use this information to prepare for future clinical trials. If you are interested in participating in the registry, or would like more information, you can email registry@lafora.es.
Also, Chelsea’s Hope is in the process of creating a caregiver registry to provide better support for the needs of caregivers, understand what caregivers feel is important in patient care, allow for more networking, and for clinical trial planning. Stay tuned for more information about that, soon!
How do I find a good neurologist?
A neurologist who is a childhood epilepsy specialist would be most appropriate for children with Lafora disease. Your child’s pediatrician may be able to guide you in choosing a neurologist who is a good fit for your family. In addition, by connecting with the Lafora community, you may benefit from the perspectives of other families or experts.
What questions should I be asking the doctor?
You may know some of the latest research before your doctor, or you may have heard about a treatment, supplement, or diet that you want to try. You should ask your doctor for their recommendation prior to starting something new.
If your doctor doesn’t have an answer, you could ask them who you could be referred to that could help – for example, a dietician, physical therapist, occupational therapist, or social worker.
What support systems are available (mental health, support groups, child care facilities, etc.)?
We are always here to help you in any way we can. Part of our mission is to support those affected by Lafora disease, after all! Chelsea’s Hope has a Facebook group, exclusively for families, which we invite you to join. You can also connect with our Director of Family support, join a monthly parent support group, or learn more about our sibling support program.
We also recommend some other organizations and readings on our Resources page, some of which we’ll highlight here:
Join our Lafora disease family page on Facebook, a private space to share information about caring for a loved one with Lafora disease. Newly diagnosed families can connect with a community that understands exactly what you’re going through! The Facebook group is a place where we can share concern, love, support, and hope with each other.
Please note: your approval request may be denied if you do not answer the questions or are not a Lafora disease family member.
Finally, everyone is welcome to give us a like on Facebook! The Lafora disease community spans families to include friends, clinicians, researchers, industry partners, and well-wishers. Please follow along for the latest updates and check out our latest post to the right.
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Niki Markou2024-10-02 18:20:562024-10-07 05:47:53Emine Malaj
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Christine Kelly
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Christine Kelly2024-02-02 13:36:132024-02-29 17:04:50Zaina Zaid Nemer
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Christine Kelly2024-01-29 16:39:572024-02-29 17:06:21Tracy Anastasio
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Christine Kelly2024-01-29 13:40:052024-02-29 17:06:19Carmen Anastasio
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Christine Kelly2023-03-08 11:26:352023-04-20 09:58:47Mia Vivian Clement
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Chelsea's Hope2022-12-21 10:34:272024-04-03 06:25:27Alexis Rodriguez
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Chelsea's Hope2022-03-09 21:58:572023-03-16 10:40:58Jessica Nicole Ambroe
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Niki Markou2022-01-31 23:43:542023-09-01 13:33:36Anissa Merriam
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Niki Markou2021-09-28 18:04:372022-02-17 19:43:01Gehad Breadiy
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Niki Markou2021-09-28 17:56:072022-02-17 19:47:40Khari McCrary
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Chelsea's Hope2020-10-21 06:28:372023-09-28 14:20:39Angelina Lati
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Alan Barter
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Alan Barter2019-12-04 08:31:542022-12-27 06:48:10Thomas Barter
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Chelsea's Hope2017-09-24 23:16:092023-05-12 14:37:19Milana GajicThe 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
Noventia Statement for the Lafora Community
/by Christine KellyNoventia Pharma released a statement for the Lafora community that Dr. Gentry read at the 2024 Lafora Disease Science Symposium. Please read it below: Dear Lafora Community, A few weeks ago we finalized an agreement for the rights to ION283, Ionis’ investigational medicine for the treatment of Lafora disease. Since its founding, Noventia Pharma, a […]