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Napa MPS Race for a Cure

Sun April 27, 2025 Napa, CA 94558 US Directions
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Fundraiser

TEAM PETER
Help us race for a cure to MPS / Hunter syndrome!

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$16,954

Raised of $15,000

$0
$15,000

TEAM PETER needs *YOU*!

Our son Peter is an energetic and extra-friendly 7-year-old who is passionate about friends, mini golf, dogs, Leprechaun traps, Easter egg hunts, and inquiring about the name, age, and relationship of each member of your family :). What is not so obvious is that Peter has a rare, life-limiting genetic condition called Mucopolysaccharidosis Type II (MPS II), also called Hunter syndrome. Each spring since Peter's diagnosis in 2019, we have rallied a team of friends, family, and Peter fans to join us in supporting the National MPS Society's Race for a Cure in Napa in order to raise awareness for Hunter syndrome and other related MPS conditions, as well as to raise money that will help support families and fund key research aimed at finding treatments and (hopefully someday) a cure for Hunter syndrome and all MPS conditions. 

 

Peter's goofy and gregarious demeanor belies his amazing strength and resilience in the face of more medical treatments and adversity than many will face in their lifetimes. Shortly after his diagnosis of Hunter syndrome (MPS II) at 20 months old, our family moved into UCSF Benioff Children's Hospital and Peter underwent a bone marrow transplant -- bravely donated by his then-4-year-old big sister Maddie, who remains his biggest champion. Two years ago, Peter was accepted to participate in a new clinical research trial through which he now receives a weekly infusion of an investigational medication specifically targeted to help the brain impacts of his disease. It’s not easy or enjoyable for him to get a "poke" and to be hooked up to an IV pole for 5 hours every week, or to regularly miss school and fun activities for hours of medical appointments, tests, and procedures at the hospital. But Peter is a trooper and we've experienced some tangible benefits of his weekly treatment -- including no more hearing aids, improved joint mobility and coordination (which allows him to do the monkey bars, ride his bike to school, and even learn to ski!), and his continued learning while others his age are already losing skills. We are hopeful that this treatment will receive FDA approval and become available to all of Peter's Hunter syndrome friends within the next couple of years... AND we continue to work toward finding a more durable cure so that Peter won't need weekly infusions for life! We are so grateful for our community's love and support that hold us up and carry us forward every day on this challenging journey. 

 

The Napa MPS Race for a Cure provides an opportunity each year for us to run/walk/roll together to celebrate the courage of Peter and MPS heroes like him, and to remember and honor those friends we have lost to this devastating disease. If you can join us in Napa on April 27th or if you want to run/walk "virtually" in support of Peter, please click here to register for the event (and make sure to join "TEAM PETER"!):

https://runsignup.com/Race/CA/Napa/NapaMPSRaceforaCure

 

If you can't join us, we still appreciate donations of any size in honor of Peter. THANK YOU for your support! 

Top Donors

$16,954 Raised By 90 Donors

$2,000 on behalf of Grace Marin
$880 on behalf of Matt Small
$500 on behalf of Alexa Hansen
$500 on behalf of Awad Family (Grace church)
$500 on behalf of Colie Neidlinger
$500 on behalf of Emmet Peppers
$500 on behalf of Julianna Hayes
$500 on behalf of Movers and Shakers
$500 on behalf of Mudong and Muhua
$500 on behalf of Peter Hoffman
$500 on behalf of Ree Edwards
$500 on behalf of Thomas Folker
$500 on behalf of Tyler Gardner
$500 on behalf of Virginia McCune
$400 on behalf of Amanda Hoffman
$250 on behalf of Colin White
$250 on behalf of David Hoffman
$250 on behalf of Lisa Leavitt
$250 on behalf of ROSALYN PORCANO
$200 from Anonymous
$200 on behalf of Anne Marie Hoffman
$200 on behalf of Colin Partridge
$200 on behalf of Glenn Rosenbluth
$200 on behalf of Jeff and Lou Joslin
$200 on behalf of Jessica Hollman
$200 on behalf of Mark Hoffman
$200 on behalf of Megan Root
$200 on behalf of Patrick Newman
$165 on behalf of Caitlin Goodman
$150 on behalf of Emma Samelson-Jones
$150 on behalf of Ilana Richman
$150 on behalf of Jason Tenenbown
$150 on behalf of John Agan
$150 on behalf of Mai Klaassen
$125 from Anonymous
$100 on behalf of Arwen Brown
$100 on behalf of Ashley Shepherd
$100 on behalf of Bianca Sills
$100 on behalf of Carol Krizan
$100 on behalf of Christy Atkisson
$100 on behalf of Craig Rubens
$100 on behalf of Douglas Hannah
$100 on behalf of Edward Kim
$100 on behalf of Eliza Lochner
$100 on behalf of Erin Heyert
$100 on behalf of jennie robin
$100 from Anonymous
$100 on behalf of Joanne Sprague
$100 from Anonymous
$100 on behalf of Karen Zinn
$100 on behalf of Kristin Moore
$100 on behalf of Kristin Ziebarth
$100 on behalf of Michael Edwards
$100 on behalf of Michael Straus
$100 on behalf of Natasha Kindergan
$100 on behalf of Roderick Miles
$100 on behalf of Sam Flynn
$100 on behalf of Sarah Davis
$100 on behalf of sharon pancio
$100 on behalf of Susie Dirks
$100 on behalf of Tiffanie Gallo
$100 on behalf of Tucker Richmond
$75 on behalf of Gabrielle Muse
$54 on behalf of Marci Rubensohn
$50 from Anonymous
$50 on behalf of Claire Dougherty
$50 on behalf of Eamonn Tucker
$50 on behalf of Emily Rice
$50 on behalf of Kelly Ellis
$50 on behalf of Laura Gorecki
$50 on behalf of Logan Clark
$50 on behalf of Matt Worth
$50 on behalf of Melanie Baskind
$50 on behalf of Samantha Kamras
$50 on behalf of Shannon Parsons
$50 on behalf of William Sherrill
$50 on behalf of Wilms family
$40 on behalf of Brad Bowery
$35 on behalf of Child Development Center of Marin
$30 on behalf of Elaine Wong
$30 on behalf of Grace Sobrero
$30 from Anonymous
$25 from Anonymous
$25 on behalf of Elaine Cramer
$25 on behalf of Elyse Mager
$25 on behalf of Kasey Ley
$25 on behalf of Miranda C. Thoma
$25 from Anonymous
$20 on behalf of Alisa Folda
$20 on behalf of Danielle Roth

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