Becky’s Half-Ironman Fundraiser

Hi everybody, my name is Becky (Stone) Juliussen and I am doing the Ironman 70.3 New York (half-ironman) at Jones Beach, Long Island on September 28, 2024. This is a 70.3 mile race with a 1.2 mile swim, 56 mile bike ride, and ends with a 13.1 mile run.

I wanted to use this event as a way to raise awareness and funds for my friends' daughter, Mandy who was born with Alternating Hemiplegia of Childhood (AHC). All money will go to the non-profit, Miracle 4 Mandy, which is set up to find and develop a cure for AHC.

Ways to Sponsor -

$0.25 per mile = $17.58

$0.50 per mile = $35.15

$1.00 per mile = $70.30

Or any donation that you choose to make!

Mandy's Story:

Mandy is a sweet and loveable 5 year old girl who loves school, silly faces, and spending time with her big sister and baby brother. Unfortunately, Mandy was born with the extremely rare, neurological disorder called AHC.

AHC causes repeated, hemiplegic or quadriplegic attacks (paralysis of the body) or bouts of dystonia (stiffening of extremities) occur, affecting one side of the body or both sides of the body at once. The attacks may last for minutes, hours, or even days. AHC is caused by having a mutation within the ATP1A3 gene.

Although the disorder is named “childhood”, those affected by AHC do not grow out of the disorder. As children with AHC age, they continue to develop difficulties in fine and gross motor skills, cognitive function, speech, and social interactions.

Fortunately, groundbreaking research for gene therapy and gene editing to treat and ultimately cure AHC has been underway for several years and is showing positive results. These treatments can be given to Mandy and her AHC friends as soon as next year if the funding is there.

The problem is not whether or not AHC can be cured; the problem is getting the funding to do it. This disease only affects about 300 people in the United States, so there is no funding for the disease outside of what parents can raise themselves. Your contribution will help us ensure Mandy can reach her highest potential by providing her effective the treatments that he needs to thrive. More information about Mandy and AHC is available at www.Miracle4Mandy.com

All funds will be used to further the gene therapy and gene editing research for AHC through Miracle 4 Mandy. Tax-deductible contributions can be mailed to:

Miracle 4 Mandy

414 Church St.

New Milford, PA 18834

(write "Ironman" in the memo line)