Headshot of Jenifer Merriam smiling in a red dress.

Announcing Vice President Jenifer Merriam

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Headshot of Jenifer Merriam smiling in a red dress.Meet the Board of Director’s Vice President, Jenifer Merriam

Jenifer Merriam is a mother of two children, Anissa and Ty, affected with Lafora Disease. At her daughter’s diagnosis in 2016, she was told there were no treatments or cures. She left that appointment hopeless and not sure what to do. Jenifer began the isolating journey of being a Lafora parent with a need to connect with other families suffering from this horrific disease and a desire to do something to help save her daughter. She researched more about Lafora Disease and soon found Chelsea’s Hope Lafora Children’s Research Fund. Shortly after that, she attended her first symposium and began connecting with families, researchers, and doctors within the organization.

Obtaining our ICD-10 Code

Jenifer joined the board in 2018 as a liaison to the Rare Epilepsy Network and the Epilepsy Leadership Council. She also served as the research director and spearheaded obtaining an ICD-10 code for Lafora Disease. This code became official on October 1, 2023. The ICD-10 code is something that Jenifer is very proud to have been a part of.

“Our Lafora ICD-10 code will be beneficial to our entire Lafora community by helping to accurately capture and track prevalence, enhance research efforts, and aid in proper diagnosis, treatment, and services to patients.”

From Parent Lead to Vice President

Jenifer has also served as parent lead and facilitated parent groups within Chelsea’s Hope to connect Lafora families for support. She stepped away from being a business owner to provide full-time care to Anissa after her diagnosis. As Vice President, Jenifer looks forward to using her leadership experience and skill set to help advance the organization’s mission to make the impossible-POSSIBLE!

Finally, Jenifer’s daughter, Mariah Merriam, is her only child without Lafora Disease. Mariah is also involved with Chelsea’s Hope. She was an instrumental part of the ICD-10 code process and currently leads the sibling support group for Chelsea’s Hope.

We hope you will join us in congratulating Jenifer on her new position on the Board. She got involved with Chelsea’s Hope to advocate for her children, find treatment options, and make an impact for all the children and families living with Lafora Disease. Jenifer has certainly made a positive impact, and we are thankful for her continued work for our organization and on behalf of every Lafora family.

Attendees at the Lafora disease science Symposium 2023 in Bologna

Lafora Symposium 2023 in review

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Attendees at the Lafora disease science Symposium 2023 in Bologna

The 8th Lafora Disease Science Symposium was held October 9-10th, 2023, in Bologna, Italy. It was the largest event yet, with more than 30 researchers, clinicians, and patient advocates gathered to share their expertise on Lafora Disease. The community joined worldwide to work toward improving treatment for Lafora patients.

Thank you to all the attendees

The team at Chelsea’s Hope was grateful to be able to meet in person and connect with our incredible partners and families who support our mission.

Families, you are why we exist. Reaching a cure for our children motivates our work daily, and we know you share that goal. We are thankful to be a part of a committed community worldwide that is fighting Lafora Disease.

To all speakers, thank you for sharing your time and expertise with the Lafora Community at our Symposium this week! Your presentations gave us hope that better treatment options for our patients are coming soon. Truly, we are so grateful for the Lafora research network and dedicated clinicians who collaborate to find a cure for our kids. 

Thank you to the fantastic hosts in Bologna from ISNB IRCCS. You made us all feel welcome, and we look forward to future symposiums in Italy.

We are immensely grateful to our partner organizations, whom we commit to continue connecting with to advance our joint fight against Lafora Disease.

Finally, to all attendees of the 2023 Lafora Symposium, thank you for joining us in Bologna! If you have any photos from the Symposium that you’d like to share, please upload them HERE. Anyone can view the photos there by clicking the link. With a Google Drive account, anyone can upload pictures, too. Use #LaforaSymposium23 on social media and tag us @chelseashopelaforacure!

Connecting with other families and hearing new data, research, and ideas from the Symposium speakers inspired a new level of hope in us as an organization. A key takeaway for us is that together, we can achieve more.

Together, we can fight Lafora.

Headshot of Meredith Williams in business dress, smiling.

Board Secretary Announcement

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Headshot of Meredith Williams, board secretary, in business dress, smiling.

Meet the newest member of Chelsea’s Hope: Board Secretary, Meredith Williams!

Meredith Williams is a first-year graduate student in the Development, Disease Models, and Therapeutics Ph.D. program at Baylor College of Medicine in Houston, Texas. She earned two bachelor’s of science from the University of Kentucky, where she worked as an undergraduate research assistant in Dr. Matthew Gentry’s lab.

Her main research interests include neurodegenerative diseases, and she is especially passionate about rare disease research. You may recognize her from our social media; she volunteered at the 2022 Lafora Disease Science Symposium!

Meredith joined Chelsea’s Hope in September 2023 as the board’s secretary with the ultimate goal of raising awareness about Lafora’s Disease through improving intra-organization structure and communication.

We are so grateful to have her as our board secretary at Chelsea’s Hope.

Click here to learn about the members of our team.

 

Raise Awareness for Lafora Disease on Lafora Body Disease Day 2023

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Help us reach a cure #FightLafora #LaforaBodyDiseaseDay

Share how you #FightLafora on October 1, 2023, our third annual Lafora Body Disease Day, and raise awareness about Lafora Disease!

Creating awareness is key to more research, better support, and a brighter future for our kids with Lafora Disease. Keep reading to find out how you can join in.

We invite you to create awareness on October 1 by sharing your story, the stories of the Children of Chelsea’s Hope, educational posts, or encouraging others to watch the recent Fighting the Rare documentary. Check out our social media toolkit for ideas!!

This October 1, we’ll also be celebrating ICD-10 code G40.C, so there is a lot we can share about as a community online. You can also join the #FightLafora social media challenge or contact your local news networks. Families, please contact us if you would like support in sharing your story with press outlets.

Chelsea’s Hope began recognizing October 1 as Lafora Body Disease Day in 2021. This year would have been Chelsea’s 33rd birthday. She continues to inspire the work we do, including raising awareness about Lafora Disease.


#FightLafora Social Media Challenge

One way to raise awareness on Lafora Body Disease Day 2023, or anytime after, is to join the #FightLafora social media challenge. We love seeing how you’ve used the hashtag on your posts over the past year and try to reshare what we can!

Want to join? Here are the steps:
1. Write #FightLafora
2. Take a photo
3. Share it on your social media

+ you can also tag three friends to join the challenge to create awareness about Lafora.

Creating awareness about Lafora is one step to achieving our mission of improving the lives of those affected by the devastating rare disease and helping to accelerate the development of treatments. Thank you for raising your voice. Together, we can fight Lafora!

Lafora Body Disease Day 2023 Social Media Toolkit