Dear Lafora Disease Community,
We have received a letter from Ionis Pharmaceuticals regarding the proposed clinical trials 2022.
Click here to read statement
This year has presented us with new challenges yet again.
Continuing to Hope…
We will never stop fighting for a cure. Our team is working tirelessly to uncover new ways to overcome our challenges. We will continue to update all of you as we receive more information.
Want to read some research on Lafora disease but a more simplified version? Well Dr Jordi Duran from the Institute for Research in Biomedicine (IRB Barcelona) in Barcelona, Spain has provided us with an easier version of his latest research paper for us to read.
Research Paper: Lack of p62 Impairs Glycogen Aggregation and Exacerbates Pathology in a Mouse Model of Myoclonic Epilepsy of Lafora
This paper discusses the accumulation of glycogen aggregates and understanding the role of the protein p62
Read more here
Did you know that you can now donate to Chelsea’s Hope with PayPal?
Take a picture of this QR code with your phone
or click here
A group of 50 patient-led organizations that are strengthening rare disease communities, improving diagnosis, accelerating research and driving progress in the fight against rare diseases.
Patients are a powerful force in driving research for rare disease — we provide critical insights about our diseases and are fueling significant discoveries.
7,000 rare diseases, one community fighting for cures.
One of our rare mamas, Niki Markou has been featured on the Rare Mamas website that is empowering rare disease moms. Rare Mamas contains blogs, podcasts and resources by rare disease mom founder, Nikki McIntosh who is a writer, speaker and advocate for mamas who care for children with rare disease. “It was an honor to be featured on her page.” said Niki Markou who is one of our Chelsea’s Hope board members
To read the article go to https://raremamas.com/just-like-a-butterfly-by-niki-markou/
October 1st Marks Inaugural Awareness Mission
for Lafora Disease
Lafora Body Disease Day is raising awareness for funding, research, and medical therapies
SACRAMENTO, Calif. – September 30, 2021 – Chelsea’s Hope Lafora Children Research Fund today announced that October 1, 2021, is the inaugural Lafora Body Disease Day. The mission is to create awareness, connect families, fund research, and maintain hope, with awareness efforts continuing throughout the month.
Lafora Disease is a degenerative neurological condition affecting children. Lafora Disease is a genetic condition in which patients are unable to maintain a normal concentration of glycogen, resulting in a toxic accumulation of glycogen, or Lafora Bodies, in the heart, spine and brain. Lafora Disease is terminal, there is no cure. Children first show symptoms in their early teens and typically die within 10 years. Unfortunately, accurate diagnosis is often not made until anti-epileptic medications no longer control the seizures.
“There are no initial signs or symptoms,” said Frank Harris, the President of Chelsea’s Hope Lafora Children Research Fund. “Children are normal, active and intelligent throughout their elementary school years. Seizures are typically the first symptoms, but then the disease shows its true horror. The seizures become increasingly uncontrollable. Then these once normal, healthy children suffer with further physical and neurological degeneration. They lose their ability to walk and talk. They must be fed via a G-tube and need around-the-clock care. And these families know that without a cure, their children will die in a vegetative state, typically within 10 years of onset.”
Families are very involved in raising awareness of Lafora disease, such as Azeza Kasham and Moniqueca Barfield, who have been advocating for medical and financial support in the fight against their children’s affliction. Azeza lost her first-born son, Haitham, at age 16 and is now fighting for her 12-year-old son, Gehad. Moniqueca is a mother of 18-year-old Khari, who developed symptoms and experienced her first seizure when she was 12.
Chelsea’s Hope was created in 2007, when Linda Gerber and a small group of dedicated friends developed a website to share her daughter Chelsea’s story with family and friends. Under their leadership, the organization became the key source of information for affected families and the primary source of research support. It is the mission of Chelsea’s Hope to raise awareness about Lafora Disease, connect with other Lafora families and help fund research to find a cure.
To help fund research to find a cure for Lafora Disease, visit chelseashope.org/donate. Chelsea’s Hope can also be followed on Facebook @chelseashopelaforacure.
Official document PRESS RELEASE_Chelsea’s Hope_Lafora Body disease Day
It’s our first year acknowledging a day for Lafora disease and October 1st is the day.
Lafora Body Disease Day
Our mission is;
Creating Awareness – Connecting Families – Funding Research – Maintaining Hope
Our goal is to raise awareness and much needed funding to continue the research and turn them into therapies. We have done so much in recent years and we are almost there….hope is closer than it ever has been before!
We are dedicating the whole month to creating awareness by asking for help from all of you to ensure we reach our goals!
So please join us for Lafora Body Disease Awareness Month!
Week 1 – Fri 1st October
Message 15 of your friends to set their #AmazonSmile charity as Chelsea’s Hope Lafora Children Research Fund or ask them to donate $20!
Tag us in your posts or hashtag #laforabodydiseaseday #AmazonSmile #EpilepsyFoundation
Week 2 – Fri 8th October
Create an event – Host a special night, invite your friends and ask for a $20 donation.
Tag us in your posts or hashtag #laforabodydiseaseday #laforamovienight or #laforagamesnight or #laforadrinksnight #EpilepsyFoundation
Week 3 – Fri 15th October
“Challenge Your Friends Week”
Do the #OneChipChallenge or #CandyJarChallenge guessing competition and ask for $20 donations or nominate 3 friends to challenge you and pay $20.
Tag us in your posts or hashtag #laforabodydiseaseday #onechipchallenge #candyjarchallenge #EpilepsyFoundation
Week 4– Fri 22nd October
Wear purple lipstick, tag us in your posts and nominate 3 people to donate $20
Hashtag #purplelipsforacure #laforabodydiseaseday #EpilepsyFoundation
Week 5 – Fri 29th October
Create an event – Host a Halloween party, invite your friends and ask for a $20 donation
Tag us in your posts or hashtag #laforabodydiseaseday #laforahalloweennight #EpilepsyFoundation
We look forward to seeing your posts on Facebook