News & Blog

The 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'.

Chelsea’s Hope Joins FACE It 2024

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Wednesday, September 18th, is Childhood Dementia Day, and we’ve joined the FACE It awareness push to make childhood dementia impossible to ignore. 2024 is the second year Chelsea’s Hope is participating in the movement. We invite you to join us!

The Childhood Dementia Initiative (CDI) started the FACE It campaign to raise awareness of childhood dementia, which so many people don’t know exists.

What is childhood dementia?

We see what dementia does to our loved ones with Lafora disease. Most people associate the life-altering symptoms of dementia with older people, but according to our friends at CDI, more than 100 genetic conditions cause dementia in childhood. The prognosis for children with childhood dementia is dire: 50% die before the age of 10, and 70% before reaching adulthood. All will die prematurely. View a childhood dementia fact sheet HERE.

The 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'.


On September 18th, we invite you to make your face impossible to ignore! Join the fun with face paint, makeup, or a filter before posting to social media. Together, we’ll draw attention to childhood dementia and fight Lafora disease.

Be sure to send Chelsea’s Hope your photos or tag us if you want us to feature you on our social media. Use the hashtags #ChildhoodDementia and #FACEit to join. You can also check out CDI’s FACE it kit with tips and resources to raise awareness.

So, will you join the movement?

I’m in!
IONIS Statement for the Lafora Community September 4, 2024

Ionis Statement for the Lafora Community

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IONIS logoIonis shared a statement with Chelsea’s Hope for the Lafora community. They have agreed to license the ION283 program to Noventia Pharma, and Noventia will assume responsibility for developing it. 

The licensing of the ION283 program will not impact the Safety Study. That will continue as planned, and we will update our community as soon as enrollment is open on clinicaltrials.gov.

Read statement

As a reminder, please sign up for our mailing list and indicate you want to receive “research updates” to receive this news as soon as possible.

ION283 Safety Study Approval ASO Therapy for Lafora Disease

ION283 Safety Study Approved

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We 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.

Berge A. Minassian, M.D

“30 years in the making, we now have FDA approval to start our ION283 clinical trial.

I would like to thank each of your associations for your support over the years…” – Dr. Berge Minassian

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.

Donate today!


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.”

Purple text says: T-SHIRT DESIGN CONTEST 2024. The background is purple. The Chelsea's Hope round logo is to the bottom right. There's a photo of a white t-shirt in the center.

Announcing a 2024 T-Shirt Design Contest

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As 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.

Submit designs

White text says: T-SHIRT DESIGN CONTEST 2024. The background is purple. The Chelsea's Hope round logo is to the right of the center, separating the text (left) from an image of a white t-shirt (right).T-Shirt Design Contest Guidelines

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

  1. You must create an original design and incorporate all of the required design components outlined below. The design must align with the Chelsea’s Hope Lafora Children Research Fund brand. Your submission may not have been previously published and must not contain profanity, trademarks, other organization’s logos, or any copyrighted works of any other person or business.
  2. Design(s) must be submitted via the submission form by 11:59 pm (PT) on August 12, 2024.
  3. The winning designer agrees to sign a waiver allowing Chelsea’s Hope to use their design free of charge for any and all printing and promotional purposes.
  4. The contest winner must agree to submit a high-resolution art file within five days of notification and agree to work with the printer if slight changes/modifications are necessary for production. If not, the organization might choose an alternate winner to meet our production deadlines.
  5. By submitting an entry, you are agreeing to all contest rules. If you have any questions, please email info@chelseashope.org.

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: 

Six circles of different colors, labeled with their hex color codes. From left to right, they are: #aa499d, #505050, #78276d, #218a7c, #7547d1, #cf87c5.

 

 

FONTS:

We use Arial and Calibri along with these fonts from Canva:

There are two rows of text names of fonts. The text is in its named font. Row one, left to right: Centrale Sans Medium, Neue Machina, Apricots. Row two, left to right: Centrale Sans Light Light, Mansalva, Brittany, Antonio.

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: 

  • Concept and originality of design
  • Visibility from a reasonable distance
  • Adherence to design and submission rules and guidelines
  • Adherence to the Chelsea’s Hope branding guidelines, including logo usage, colors, and typefaces
  • Highlighting the organization’s mission

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.