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Team Fundraiser

Lace Up for Liam

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Current Team Members:
156
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$18,650

Raised of $3,000

Story

Liam was born on May 20, 2026, but just eight days later that overwhelming joy and newborn bliss turned into fear and uncertainty. We received an unexpected call from his pediatrician's office; his newborn screening test had come back abnormal.  Nothing like that ever crossed our minds and honestly had no idea what was included on the newborn screen to begin with.  That initial phone call was devastating and provided almost no information other than he needed follow-up testing with the pediatric genetics team at UNC hospital to determine whether he has a rare disease called X-linked Adrenoleukodystrophy (ALD).

We met with the genetics team the following week (which felt like an eternity) to discuss ALD and complete the additional testing needed for Liam.  After hearing more information and statistics, we actually left there feeling very hopeful it was a false positive, but still had to wait weeks (another eternity) for the final results to return.  Since 2022, when X-ALD was added to the North Carolina newborn screen panel, less than 30 boys have been diagnosed in this state.  Unfortunately, by the end of June, both tests came back abnormal, confirming what we had feared most, our son was officially diagnosed with X-linked Adrenoleukodystrophy.

ALD is a rare genetic disease that can affect the brain, spinal cord, and adrenal glands.  Those with ALD have a mutated gene that prevents the breakdown of very long chain fatty acids (VLCFA). If VLCFAs are not broken down, they build up in the body and become toxic.  The accumulation causes inflammation that damages the myelin sheath. Myelin is the protective layer around nerve cells in the brain.  When myelin is damaged, nerve cells cannot send signals from the brain to the body. This causes problems with the body’s functions, including how you move and think. This disease mainly affects boys, roughly 1 in 17,000.  ALD is a progressive disease and can be fatal.  Treatments aim to slow the progression and improve quality of life.

There is no cure for X-ALD, and there is no clear way to predict if or when symptoms will appear. However, because it was caught early through newborn screening, we now have the ability to closely monitor Liam through routine bloodwork and MRIs (at least twice per year) to watch for any signs of progression.  Unfortunately, this means lots of doctor appointments and hospital visits, needles, a team of specialists, and constant anxiety awaiting every next test result.  Ultimately, we hope monitoring is all he needs, but there’s always a possibility he may need more intensive treatment, such as a bone marrow transplant.  This is the case for 40% of boys with ALD that progresses into cerebral ALD and lesions form on the brain.  Although this is something we wish Liam didn’t have to endure, we are forever grateful for the parents before us that advocated for the addition of ALD on the newborn screen.  Please join us in spreading awareness and raising money for life-saving research!

Top Donors

$18,650 Raised By 177 Donors

$2,500 on behalf of West Deptford Energy
$1,000 in support of David Jones
$500 in support of Megan Battaglia
$250 in support of victoria BROGAN
$225 in support of Monica Cabral
$200 on behalf of QISG
$200 in support of Robert Hannigan
$150 in support of Camila & Lino Roberto
$150 in support of Liam
$150 in support of Liam
$100 in support of Adriene Plath
$100 in support of AJ Williams
$100 in support of Albert White
$150 in support of Alyssa Lepone
$125 in support of April Gary
$100 in support of Aunt Jeannie & Uncle Sandro
$125 in support of Aunt Julie and Uncle Ted Brennan
$100 in support of Baby Liam
$100 in support of Bill Brennan
$100 in support of Billy B
$100 in support of Dan and Sara Grande
$100 in support of Danette Ridgway
$100 in support of Dave / Patty Polk
$150 in support of Dave Leh
$100 in support of David Arensdorf
$100 in support of Dee Hannigan
$100 in support of Diane Sandefur
$100 in support of edward lowry
$100 in support of Isabelle Arace
$100 in support of Jacqueline Rapp
$100 in support of Janet & Dan Sobnosky
$100 in support of Joan Aders
$125 in support of KATHERINE CATOLICO
$100 in support of Kristin Arace
$150 in support of Laura Bogdan
$100 in support of Lauren Hehl
$125 in support of Leona Scavina
$100 in support of Liam
$100 in support of Liam
$100 in support of Liam
$100 in support of Liam
$125 in honor of Liam
$125 in support of Liam
$125 on behalf of Liam
$225 in support of Liam
$100 in support of Liam/Amber/Billy Brennan
$100 in support of Lou and Sue Kinkle
$125 in support of Lysa Hannigan
$100 on behalf of Marybeth Chudzik
$100 in support of Mike Brennan
$100 in support of natalie hauck
$125 in support of Pamela Wardle
$100 from Anonymous
$100 in support of Randy Resek
$150 in support of SHAUN STOEBER
$125 from Anonymous
$100 in support of The Brennan Family
$100 in support of Uncle Jeff & Aunt Debbie
$100 in support of Valerie Conlon
$100 in support of Yvonne Whitelaw
$75 in support of Claire Bayles
$100 in support of Lace Up for Liam
$50 in support of Ann-Marie Cochran
$50 in support of Audrey Brown
$50 in support of Bill and Elaine Fischer
$50 in support of Brett & Kayla Holmes
$50 in support of Brett Dubin
$100 in support of Candace Baskett
$50 in support of Carolyn Weise
$50 in support of Chris Brown
$50 in support of Christina Unknown
$125 on behalf of Courtney Lake
$75 in support of Cyndi Testa
$50 in support of D Jaxon
$50 in support of Daniel Marchionda
$50 in support of Danielle Cornman
$75 in support of Danielle Mathias
$50 in support of Dawn Boulden
$50 in support of Diane McLaughlin
$50 in support of Dillon Arace
$75 in support of Jack Brennan
$50 in support of Jane Rodriguez
$125 from Anonymous
$50 in support of Jim Nixon
$75 in support of Joe and Mary Zeno
$125 in support of Jordan Huckabee
$50 in support of Julie Wyshinski
$50 in support of Kimberly burns
$50 in support of Kristen Walsh
$50 on behalf of Lauren Porter-Rogers
$75 in support of Lee Neiberger
$50 in support of Liam
$125 in support of Liam
$100 in support of Liam
$75 in support of Liam Brennan
$50 in support of Lisa Mogg
$50 in support of Mary & John Ross
$50 in support of Mary Amer
$50 in support of Matt & Sondra Hiles
$100 in support of Matt Brennan
$75 on behalf of Michael Plath
$50 in support of Michele Grygo
$50 in support of Michelle Kisner
$50 from Anonymous
$50 in support of Oana Berry Mircu
$50 in support of Phyllis Wyshinski
$75 in support of Reagan Widmaier
$75 from Anonymous
$50 in support of Rob Hans
$50 in support of Roxanne Taylor
$50 in support of Russell Southard
$100 in support of russell southard
$50 in support of Sally Miller
$75 in support of Sharon Pietlock
$50 in support of STEPHANIE SLATE
$50 in support of Susie Maynor
$50 in support of Thomas Conlon
$50 in support of Tracey Resfearn
$125 in support of Victoria Ayares
$50 in support of Wendy Drake
$25 on behalf of Aimee & Lexi Rupple
$25 in support of AJ & Lisa Cummings
$25 in support of Alex Marchionda
$25 in support of Allison Rastelli
$75 in support of Anne Strickler
$50 in support of Audrey Brown
$50 in support of Audrey Brown
$25 in support of B&J Brennan
$25 in support of Briana Wood
$25 in support of Casey Edwards
$25 in support of Christine Pauly
$50 in support of Cindy Wollet
$25 from Anonymous
$25 in support of Debbie Scarborough
$25 in support of Dee Morell
$25 in support of Denise Blum-Krough
$75 in support of Donna Brennan
$25 in support of Elaine Vice
$25 in support of Emily + Phillip Way
$25 in support of Erin McCord
$25 on behalf of Hayes Family
$25 in support of Heather McSorley
$25 in support of Jamie & Jamie Herrington
$25 in support of Jean Rubesa
$25 in support of Jen Zullo
$50 in support of Kathy Krough
$25 in support of Kim Hewitt
$25 in support of Kim Snyder
$25 in support of Laura Brickner
$25 in support of Liam
$75 in support of Liam - Love, Uncle Justin & Aunt Amy
$50 in support of Liam and family
$25 in support of Liam Brennan
$100 in support of Liam Brennan
$25 in support of Lisa Castellano
$50 in support of Lori Fischer
$25 in support of Mary Jo Ugolini
$25 in support of Mary Williams
$25 in support of Matthew Hannigan
$25 in support of Melissa Scott
$25 in support of michelle degenova
$25 in support of Michelle Newsome
$25 in support of Nekita Roscoe
$25 from Anonymous
$25 in support of Nicole Yoakum
$50 in support of Pat Brennan
$25 in support of Sarah Dixon
$50 in support of Sharon Cook
$25 in support of Shirley Byrd
$25 in support of Steven Baker
$25 from Anonymous
$25 in support of Susan Hannigan
$75 in support of Whitney Sickler
$25 in support of William Davis
$45 in support of Desiree Sauppee
$70 in support of Taryn Garsik
$35 in support of Maylee Levin

Lace Up for Liam Team Members

(156)

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