Plunge for a Cure

The words Alzheimers and childhood should never have to be spoken in the same sentence, but did you know that 1 in 70,000 children suffer from Sanfilippo Syndrome, a disease referred to as childhood Alzheimers? Most do not. With your donation, a cure is possible.

Treatments for Sanfilippo are out there, though due to barriers in funding and policies, they remain unavailable. It will be years before they are released, but the children suffering from this disease now do not have years or even months to spare as their bodies, skills, and livelihood are being taken from them every moment. Awareness can help break down barriers to treatments for rare diseases like Sanfilippo.

For rare disease day 2023, many Sanfilippo families will be taking a cold plunge to raise awareness and much-needed funding for the research of treatments for this devastating disease. All funds will go directly to the Cure Sanfilippo Foundation. Join us in saving these children and fighting for their cure.

More information about Cure Sanfilippo Foundation: Cure Sanfilippo Foundation works to fund urgent research for treatments or a cure for Sanfilippo Syndrome. Sanfilippo syndrome is rapidly degenerative and fatal disease in children, currently with no FDA approved treatments or cure. More on the research the Foundation funds at www.curesff.org/research

More information on the #plungeforacure challenge can be found here.

- - - - - - - - - - - - - - - - - - - - - - - - - - - -

ABOUT US

We are The Diamond family and our son Noah was diagnosed with Sanfilippo Syndrome in December 2022. We are fighting to save his life and all children affected by this horrible disease.

- - - - - - - - - - - - - - - - - - - - - - - - - - - -

WHAT IS SANFILIPPO SYNDROME?

Sanfilippo Syndrome is caused by a single gene defect which leads to lack of a necessary enzyme in the body. This lack of enzyme results in the build-up of toxic storage in every cell, and is especially harmful to the brain.

This build-up causes a cascade of detrimental effects, such as increasing intellectual disability, loss of mobility, loss of the ability to eat, seizures, movement disorders, and eventually early death, often before the second decade of life.

Learn more at https://CureSanfilippoFoundation.org/What-is-Sanfilippo

- - - - - - - - - - - - - - - - - - - - - - - - - - - -

WHERE IS YOUR MONEY GOING?

Every dollar goes to Cure Sanfilippo Foundation, a 501(c)(3) nonprofit organization which funds research for Sanfilippo Syndrome that could give Noah a chance at life. Donations are tax deductible. 100% of the funds raised here will go toward the research. We are currently racing against time to fund potentially life-saving research that could lead to a clinical trial. It will help Noah and so many other children have a chance at life, today and for generations to come. ***Any donations received above the goal will go directly to Cure Sanfilippo Foundation new research projects in need of funding***

WHY SO MUCH MONEY?

Getting a clinical trial up and running can cost millions of dollars. In rare diseases, large pharmaceutical companies have little interest because they don’t see ways to make a profit. The truth is that it is left up to parents, patient-led organizations, and donors to drive and fund the research for treatments and a cure. This will help fund research that could lead to a clinical trial that can possibly help Noah and other children with Sanfilippo. Raising this amount of money may seem daunting, but it has been done before and research and clinical trials have happened as a result. It can again.

TIME IS OF THE ESSENCE

Sanfilippo Syndrome causes children’s cognitive and physical abilities to be completely taken away quickly once they begin regressing. In time, children regress back to an infantile state, likely never to return. Sanfilippo is a rapidly-progressive neurodegenerative disease that eventually takes over a child’s body completely.

Please note: This challenge was not created by Cure Sanfilippo Foundation. Participating is entirely your choice and at your own risk, so please assess your ability and safety before you participate. Cure Sanfilippo Foundation shall not be liable for any injury, damage or loss to you or your property that might occur as a result of your participation.

Cold Water Safety – General Guidance

· If you have underlying health conditions (i.e. heart disease, asthma, lung conditions) or any other medical conditions that might be affected by exposure to cold water, or if you are pregnant, then please seek appropriate medical advice before proceeding.

· Do not take part in the challenge under the influence of drugs or alcohol.

· Do not participate in this challenge if under the age of 18, unless supervised by an adult.

· Participation in this challenge is entirely at your own risk, so please assess your ability and safety before you participate. No person or entity shall not be liable for any injury, damage or loss to you or your property that might occur as a result of your participation.

· Let your friends / family know about your participation in this challenge.

· Do not undertake an open water swim unsupervised.

· Never go beyond your comfort zone.