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
ION283 Safety Study Approved
/by Christine KellyWe just learned from Dr. Minassian that the FDA has approved the ION283 Safety Study!
We are so grateful for your continuous support, for Dr. Minassian and his team at UTSW, Dr. Messahel, IONIS, and everyone involved for getting us here.
Our patient community has been a driving force in supporting reaching this stage and we can celebrate another step forward today. We hope this will lead to treatments for our children.
We do not yet have the application site on clinicaltrials.gov or the criteria for inclusion in the Safety Study. Those will be coming in a few weeks. In the meantime, we can continue fundraising and ensuring all patient families learn of this opportunity.
Budget
The estimated cost of the Safety Study is $1.5 million USD. Please remember, donations do not guarantee a spot for your loved one in the trial. We encourage donations through a patient organization. Chelsea’s Hope has an online fundraiser where you can donate and we will transfer the money to UTSW.
France Lafora is also fundraising HERE.
Please help us share this information!
If you did not get an email update from us earlier, please ensure you are signed up for our mailing list. Once we learn the criteria from Dr. Minassian, we will send out the information to everyone who has signed up for “research updates.” You can contact christine@chelseashope.org to confirm your email preferences with the subject “Check my Chelsea’s Hope Email Preferences.”
Questions? Please check out our FAQs section on our webpage.
We answer commonly asked questions about the safety study, including what it is, how much it costs, who can participate, and more! If you don’t see an answer to your question, please email katherine@chelseashope.org with the subject “Safety Study Question.”
Announcing a 2024 T-Shirt Design Contest
/by Christine KellyAs part of our upcoming Awareness Campaign, we are excited to announce a t-shirt design contest! From now until August 12th, you can submit your designs to be considered. Our Board of Directors will vote on the winning design on August 13.
Chelsea’s Hope is celebrating 15 years as a patient advocacy organization this year. We aim to improve the lives of those affected by Lafora disease and help accelerate the development of treatments. Our 2024 Chelsea’s Hope Awareness Campaign aims to spread awareness about Lafora disease and fundraise for the ION283 Safety Study.
What will the shirts be for?
They are for our community to feel connected and raise awareness about Lafora disease. Profits from the t-shirt sales will fund our mission and they will be a prize for fundraisers during our upcoming awareness campaign.
The contest winner will receive a shirt free of charge.
Eligibility
There is no entry fee to submit a design; the contest is open to all. There are no limits on how many designs you submit. However, if you are under 18, a parent or guardian must submit it on your behalf.
Rules and Guidelines
Required Design Components
The organization will place the winning design on the front of the 2024 Awareness Campaign t-shirt, which will be white. The design theme should include “Fight Lafora” and the Chelsea’s Hope logo.
Below are some brand guidelines:
LOGO:
Click here to access the Chelsea’s Hope logo.
DESIGN SOFTWARE:
Your choice, so long you can generate a PDF or image to submit.
COLORS:
The design can include the following colors:
FONTS:
We use Arial and Calibri along with these fonts from Canva:
How We Will Select a Winner
The Chelsea’s Hope Board of Directors will vote on designs, which the Executive Director will present anonymously.
Designs will be reviewed for:
Fine Print of the T-Shirt Design Contest
Publicity and Agreement: Contest entry constitutes an agreement by the submitting designers to grant Chelsea’s Hope Lafora Children Research Fund a free license of all copyrights of the submitted works in perpetuity for publicity and promotional purposes. The winner(s) will be subject to approval by the organization.
Media Release: By submitting artwork, you agree that if your design wins, Chelsea’s Hope Lafora Children Research Fund retains first printing rights and a free license, in perpetuity, to utilize the design on t-shirts and other promotional items and marketing and fundraising materials. You guarantee that your design does not contain any copyrighted material, including images/copy found on the internet, unless marked as published under a Creative Commons (cc) license. Contest entrants not selected as the winning designer(s) retain all rights to their artwork.
G-Tube Tips – A Mother’s Perspective
/by Niki MarkouA Mother’s Perspective on the Benefits of a Feeding Tube for Lafora Disease Patients
Has your child got a Gastrostomy tube, or have you been advised they will need it?
It is a very daunting decision to make as you are still grieving from the devastating diagnosis and watching your child change so rapidly. Take the time to research gastronomy tubes (g-tube) and decide when you feel ready. It is another big change for you, the family, and especially your child. Here are a few recommendations I’d like to share to help make this decision and to make it easier if and where possible.
The benefits of getting a gastrostomy tube inserted early can be helpful as your child is less at risk when their Lafora symptoms are less severe. Having the g-tube early will save on trips to the hospital if there are emergencies where you need to administer emergency medications. You can save the stress by helping your child in the comfort of your own home. You can also give additional nutrition if they are not adequately meeting their dietary requirements. A g-tube will help keep them strong for a lot longer, especially if you can provide them with nutrition that they necessarily wouldn’t eat if you asked them to.
Tips for caring for your child with a gastrostomy tube:
More information on g-tubes
Our Resources page has links to helpful tips. More information on ways to care for your child with a gastrostomy tube can also be found here. You can also join the TubeFed community on Facebook. Finally, check out these resources I’ve found helpful.
My recommendations are from my own experience with my daughter and shared from a mother’s/carer’s point of view. Please discuss everything with your healthcare team and follow any medical practitioner’s advice when given.
Sending Love
Niki
Parent and Director of Family Support
Announcing the Hybrid Lafora Disease Biomarker Workshop
/by Kit DonohueAugust 19-20, 2024 at UT Southwestern
Chelsea’s Hope is proud to partner with the UT Southwestern Medical Center (UTSW) in Dallas, Texas, to host a biomarker workshop. Our goal is to provide a platform for community education about the role of biomarkers in accelerating the path to clinical trials for Lafora disease.
For Families
Have you ever wondered why we collect blood serum and CSF samples for our children with Lafora? Do you have questions about why patients undergo regular MRI scans? This workshop is designed to educate about how biomarkers can accelerate the path to therapy approval in clinical trials. Also, we want to learn which biomarkers are the most promising for use in treating Lafora disease. Above all, this knowledge will lead to a brighter future for our children. Please register to attend virtually.
For the Lafora Research Network
Clinicians and researchers, we will be sponsoring several expert discussion panels during the workshop to reach a consensus on protocols for sample collection and critical markers to track. Please register to be a part of the discussion for the topics below:
Questions? Please check out our FAQs section on our webpage.