Benny and the Jets

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Current Team Members:: 21

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$11,498

Raised of $8,500

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Join our team to raise money for ALD research! When Bennett was just over a week old we found out Bennett has X-ALD through Washington states newborn screening process and since have found Sydney also has it. It was a long process to determine this diagnosis and has been incredibly hard, but one we’ve gotten through by leaning on our community of family and friends. We are raising money for X-ALD and look forward to the virtual 5k.

We will walk from the community center in Issaquah and will do a 5k together for anyone who wants to join us at 3pm on the 19th. We will leave promptly at 3:30pm. If not, we hope you can walk or run virtually in support of the event and research towards X-ALD.

We found out this news from a newborn screen that Washington State does on all newborns. We are lucky Bennett has no symptoms at this time and Sydney isn’t at risk for symptoms until later in life, but it does impact our family planning for future children. Bennett and Sydney are both healthy and living life in the present moment. We appreciate your support here, we feel so lucky to have our friends and family.

ALD is a deadly genetic disease carried on the X chromosome that affects 1 in 18,000 people. The majority of those severely affected are boys and men. Current statistics show that 4/10 boys diagnosed with this disease will develop the cerebral form of ALD. This brain disorder destroys the myelin or protective sheath wrapped around the neurons. These nerve cells are what allow us to think and control our muscles. Most cases are found in childhood between ages 4-10 years of age when the symptoms progress. Seizures, blindness, deafness, loss of muscle control and progressive dementia leading to death or permanent disability within 2-5 years from diagnosis. Thankfully, ALD was added to the WA state newborn screen in 2018. Not all families are this lucky as it’s not on all states newborn screening. We are working with the best research hospital (The University of Minnesota/U of M) in the world for our boy’s disease. When Bennett reaches two years old he will get routine MRIs every 6 months, but starting now he is doing labs to monitor his adrenal functions. Bennett does routine blood work every 3-4 months. If a lesion is picked up on the MRI, the treatment is either a bone marrow transplant or gene therapy to “reboot” their bodies and halt the disease which would lead to a cure. Not without risk though.

For women symptoms typically present themselves in 40s-50s with 88% of women experiencing symptoms by age 80. For women the symptoms impact mobility. There is no way to know what form will present for either of us until symptoms onset or a lesion is found on an MRI. We also have no idea if we won’t be impacted at all by ALD, and will continue to live healthy lives. It’s all we can pray for.

Given this is such a rare disease fundraising is so important to make an impact on research towards cures. Please consider donating in support of an amazing organization. This fundraiser supports the research towards ALD and is something near and dear to our family. We hope you can join us on our walk and can help us as we fundraise to X out ALD.

$1,000 in support of Bennett Pruchno

$540 in support of Hoda Mezistrano

$500 in support of Benny and the Jets

$500 On Behalf Of Connor Tedstrom

$500 in support of Justin & Leah Calvo

$500 in support of Melodie Schneider

$250 in support of adam olscamp

$300 in support of Bennett Pruchno

$250 in support of Benny and the Jets

$250 in support of Marcia Willing

$250 on behalf of Ryan & Elizabeth

$200 in support of Bennett Pruchno

$200 from Anonymous

$200 in support of Moore family

$180 in support of Benny!!!!

$180 in support of Carla Bauman

$180 in support of Marisa Stratiner

$175 in support of Alena Kane

$120 from Anonymous

$118 in support of Jon Calvo

$118 in support of Mathias Cohanim

$100 in support of Amy Lavin

$100 in support of Angelica Seregina

$100 in support of Annie, Sarah & Austin <3

$100 in support of Bennett Kane Pruchno

$125 in support of Bennett Pruchno

$100 in support of Bennett Pruchno

$100 in support of Benny

$100 in support of Benny and Syd

$100 in support of Benny, with love from Rachel & Jonathan

$100 in support of Brian Caruso

$100 from Anonymous

$100 in support of Gerber / Pacht / Monas

$100 in support of Haley Luciani

$100 in support of Helen Wang

$100 in support of Jay Robinson

$100 in support of Jessica Michels

$150 in support of Jill Purse

$100 in support of John Kane

$100 in support of John Klose

$100 in support of Kacey Cleveland

$100 in support of Nishad Mulye

$100 in support of Pete & Nichole Wengert

$100 in support of Sydney and Benny <3

$100 in support of Tina Hays

$100 on behalf of Will, Jo, Jane and Lily

$75 in support of Bennyyyy!

$75 in support of Nadav Brum

$54 in support of Benny & family

$50 in memory of Albert and Esther Eskenazi

$50 in support of Bennett

$50 on behalf of Benny

$50 in support of Benny

$75 in support of Benny

$50 in support of Benny and Sydney

$50 from Anonymous

$50 in support of Courtney Lo

$50 from Anonymous

$50 on behalf of Jack

$50 in support of Jake Schultz

$50 from Anonymous

$50 in support of Kember McGowan

$75 in support of Lindsy Doerr

$50 on behalf of Lulu Webster

$50 in support of Matt Bercow

$50 in support of Maya Zwang-Saunders

$50 on behalf of Molly Lassiter

$50 in support of Nicole Tong

$75 in support of Peri Malters

$50 in support of Samantha Johnson

$50 on behalf of Shane Siegelman

$50 from Anonymous

$36 in support of Benny

$36 in support of Pene Gerber

$25 in support of Benny!!

$25 from Anonymous

$25 on behalf of Christina & Elsie

$25 in support of Ian McWhirter

$25 in support of Kathryn Hassall

$50 in support of Lil Benny boy and lovely syd

$25 from Anonymous

$25 in support of Ravi Sharma

$25 in support of Richard Gartenberg

$25 in support of Syd and Benny

$50 on behalf of The LaBarge Family

$18 in support of Laney Levine

$68 from Anonymous