If you’re from Roxborough or Manayunk, you’ve likely heard of the Westerfer family. Many of the Westerfers went to school nearby and still live in the area with their families.
But what you might not be aware of is the disease that is affecting many members of their family. It’s called Charcot-Marie Tooth disease, or CMT, and it’s often passed down through families. Many describe CMT as “the biggest disease you’ve never heard of” and, according to the CMT website, there is no known cure.
CMT is a group of disorders passed down through families that affect the nerves outside the brain and spine. These are called the peripheral nerves and problems in at least 40 genes cause different forms of this disease. The disease leads to damage or destruction to the covering around nerve fibers and eats away at muscle.
On Wednesday, Jan. 18, the family will join ‘Team Yunkers’ in hosting a fundraising event at Spanky’s Pub in Manayunk. All proceeds will go directly to CMT research.
Vickie Remolde-Westerfer’s father was one of 13 children born to Katherine and William Westerfer. Her grandfather had CMT, which was inherited by her father, four of her uncles and three of her aunts. Her brother has also inherited the disease.
Her dad had numerous operations where muscle was taken from his legs and placed in his arms, however, the disease soon began attacking the new muscle. She said that despite having difficulty even picking up a fork, her father never let the disease get him down. Instead, he invented some gadgets designed to help people with CMT perform basic tasks.
Westerfer said that CMT can have varying severity. For example a few of her cousins have severe cases that prevent them from walking unassisted for long distances or even walking on uneven ground unassisted.
The family has hosted several fundraisers to help find a cure for the disease. This Wednesday’s event will cost $10 at the door. T-shirts and hoodies will be for sale and beers will be an extra $2.