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
Announcing February Research Roundtable Speakers
/in News, What's New /by Christine KellyDr. Mitra and Jeff Milton to Join Chelsea’s Hope Lafora Disease Research Roundtable on 8 February
We are excited to announce the two speakers that will present at our February research roundtable.
Sharmistha Mitra, Ph.D., is an Instructor in the Department of Pediatrics, Division of Child Neurology at UT Southwestern Medical Center. She joined the UT Southwestern faculty in July 2020.
Dr. Mitra’s objective is to present a comparative murine study of the amylopectinoses of APBD, Lafora Disease, and PGBM1 at the roundtable. She will share a mechanistic understanding of the function of E3 ubiquitin ligases and their associated proteins in glycogen metabolism.
Jeff Milton is the Founder and CEO of La Jolla Labs, a company developing technology for RNA therapeutics. Prior to this, he was Head of Data Sciences at Arcturus Therapeutics, where he worked on several rare disease programs, including both RNA-targeting and mRNA modalities. Jeff currently serves as an advisor to his alma mater, the Mellon College of Science at Carnegie Mellon University.
We are excited to begin the 2024 Research Roundtable series and hope you will join us for an important conversation.
Our Next Research Roundtable
Please join us Thursday, February 8th, from 10:30 am – 12:00 pm EST to learn from Jeff and Dr. Mitra. You must register for the Zoom meeting in advance. We will include a new translation and captions feature for the Zoom meeting. It will not be recorded, although we will share a summary after the meeting.
Help Lafora Patient Zaina and Family Evacuate Gaza
/in News, What's New /by Christine KellyA 17-year-old from Gaza City has Lafora Disease.
Zaina’s mom shared some of their life, messaging, “There is nothing in pharmacies…There is no clean place here. We eat with the lids of cans, and I am careful when using them so as not to harm her. Everything is bad…”
Zaina’s uncle started a GoFundMe to help evacuate his family. You can give directly his efforts to get them through the Rafah crossing.
The video below shows Zaina last week. Her Lafora symptoms are progressing
2023 Annual Letter
/in News, What's New /by Christine KellyBelow is Chelsea’s Hope annual progress update and appeal from our President, Frank Harris, Ph.D. If you did not receive a copy of the 2023 annual letter by email or direct mail, please email us. Then, we will get you set up for the future.
Read the Letter
Dear community,
As we approach the end of another transformative year, we want to express our heartfelt gratitude for your unwavering support of Chelsea’s Hope. We have made significant strides toward our shared vision of a world with a cure for Lafora Disease.
We are proud to share the progress we’ve achieved together in 2023. Your generosity has enabled us to expand our research network around the globe. Through the efforts of Chelsea’s Hope, Lafora Disease has been formally recognized by the International Classification of Diseases with an ICD-10 code. Chelsea’s Hope was awarded a grant in partnership with researchers at the University of Texas, Southwestern, and we co-hosted the 2023 Science Symposium. Chelsea’s Hope also started a Research Roundtables series, volunteer program, and sibling support program, all aligned with our mission of improving the lives of those affected by Lafora Disease.
The impact of your support is tangible: you have led us here. Your belief in our mission to help accelerate the development of treatments has fueled our determination despite the obstacles we’ve faced. There is still more we can achieve.
We kindly ask for your continued support as we close out 2023. This year, Chelsea’s Hope is raising $20,000 by January 1, 2024, so we can continue expanding and maintaining a strong, collaborative, and actionable research network. By doing so, we will be closer to starting a clinical trial.
Your donation is more than a financial contribution. It is an investment in saving the lives of the hundreds of children and their families fighting this terrible disease.
We are so grateful to be able to count on you to help our children struggling today and to honor the legacy of those we lost. Thank you for being an essential part of our work. You are building a better future for all affected by Lafora Disease.
I wish you and your loved ones a joyous holiday season and a happy new year.
With Hope,
Frank Harris, Ph.D. – President
Chelsea’s Hope Lafora Children Research Fund
Post Office Box 348626, Sacramento, CA 95834
info@chelseashope.org
Reach a Cure for Lafora Disease
Your support allows us to continue the vital work we do to reach a cure. This year-end, you can create your own fundraiser to help us reach our goal. Double your impact when you donate, because a generous community leader has offered a $10,000 match for every gift made before December 31, 2023.
Chelsea’s Hope Earns 2023 Silver Seal
/in News, What's New /by Christine KellyChelsea’s Hope is thrilled to announce we’ve just earned our 2023 Silver Seal from Candid! We are excited to share the work our nonprofit does through our Guidestar nonprofit profile.
We want to ensure you have the progress updates you need to support our work with trust and confidence. Chelsea’s Hope is committed to our vision of a world with a cure for Lafora Disease. Your contributions make our work possible. When you donate, know we continue to operate with transparency. Chelsea’s Hope will also continually update our profile now that we have the 2023 Silver Seal. Thank you for supporting our mission of improving the lives of those affected by Lafora Disease and helping accelerate the development of treatments.
Announcing Vice President Jenifer Merriam
/in News, What's New /by Christine KellyJenifer 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.
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.
Lafora Symposium 2023 in review
/in News, What's New /by Christine KellyThe 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.
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.
Board Secretary Announcement
/in News, What's New /by Riley HawkinsMeet 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
/in News, What's New /by Christine KellyCreating 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
Want to join? Here are the steps:
+ 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!