Family with rare diagnosis demonstrates WILL Power

MONTGOMERY COUNTY, Texas - Four months ago, Tim and Valerie Byers had never heard of Sanfilippo syndrome. Now they know it has forever changed their lives. In March, their four-year-old son Will was diagnosed with this rare genetic condition called Mucopolysaccharidosis type III-B (MPS III-B), commonly referred to as Sanfilippo syndrome. Because there currently is no treatment, kids with Sanfilippo are expected to lose the ability to walk, talk and function independently as accumulated cell waste poisons their bodies leading to early death. For Tim and Valerie, that outcome is not acceptable, so they have begun to work toward finding a cure.

Sanfilippo syndrome is a progressive disorder that mainly affects the brain and central nervous system. It occurs when the enzymes needed for cells to break down and recycle cellular waste are absent or defective. Over time, waste builds up leading children to suffer brain damage, organ failure, and eventually death. Because Sanfilippo is so rare, about 1 in 200,000 for Will’s type, there is limited profit in drug company research. This leads the families of affected children to step in and advocate for awareness and funding. That is exactly what the Byers are doing.

“One of our primary goals is simply to raise awareness about Sanfilippo syndrome and about MPS disorders in general,” said Valerie Byers. “If not for the campaigns of other families, we would not have discovered Will's diagnosis as early as we did. Because of the rarity, many families lose valuable time, sometimes even years, with misdiagnoses before they discover the truth. With time as the most valuable commodity, we need to spend it being present with our children, not chasing down false leads."

There are studies and promising trials in the works because other Sanfilippo families have made their voices heard and raised funding to make treatments possible. In honor of MPS Awareness Day on Friday, May 15, the Byers kicked a week of activities to focus on finding a cure. They created WILL Power, a fund to benefit the Cure Sanfilippo Foundation, and set a goal to raise $25,000 in honor Will’s fifth birthday in June: www.crowdrise.com/WILLPowerMPS.

“We are living in a time of medical miracles. With the first ever Sanfilippo human clinical trials on the horizon this year, we are engaging our community to help us find a cure for Will and kids like him. As a mother, I am urging for support so that Will can celebrate many more birthdays to come.”

How to Support WILL Power:

Through June 11 - Donate to Will’s 5 for 5 Campaign to support life-giving research on Sanfilippo Type B in honor of his upcoming 5th birthday:
www.crowdrise.com/WILLPowerMPS.

Wednesday, May 13 – Pay to Play play date at My Gym The Woodlands, 2:30 pm to 4:00 pm, 525 Sawdust Rd #109, Spring, TX 77380 (Hobby Lobby shopping center), $10 suggested family donation. The My Gym team will donate $1 for every person, child or adult, who wears purple to the gym all week long!

Friday, May 15 – Pay to Play play date at My Gym The Woodlands, 3:30 pm to 5:00 pm, 525 Sawdust Rd #109, Spring, TX 77380 (Hobby Lobby shopping center) $10 suggested family donation. The My Gym team will donate $1 for every person, child or adult, who wears purple to the gym all week long!

Friday, May 15 – Fundraiser at JerryBuilt Homegrown Burgers The Woodlands, 5:00 pm to 9:00 pm, 1335 Lake Woodlands Dr,. The Woodlands, TX 77380 (in the Mall Ring). A percentage of the night’s total sales will go to the Cure Sanfilippo Foundation.

All donations go directly to Cure Sanfilippo Foundation (Tax ID: 46-4322131), a non-profit 501c3 organization. All gifts are tax deductible. Donations can be made online with a credit card or a check can be mailed to:

WILL Power
c/o Cure Sanfilippo Foundation
PO Box 6901
Columbia, SC 29260