Penny’s Promise fundraiser to support research into rare form of muscular dystrophy planned for the Beach
By MATTHEW STEPHENS
A local family is seeking to raise money and awareness about their six-year-old daughter’s rare form of muscular dystrophy.
“She’s such a happy, kind, sweet kid that just loves life. And the idea that she is facing an uncertain future because of this progressive disease is just heart-wrenching and unthinkable for us – that there’s no answer for us. We refuse to accept that,” said Laura Devlin, mother of Penny Hunsberger.
The Penny’s Promise fundraiser and awareness event will take place on Saturday, Nov. 15, at the Toronto Beach Club.
Penny suffers from Selenon Related Myopathy SEPN-1; an ‘Ultra-rare’ form of congenital muscular dystrophy.
Muscular dystrophy is a genetically rare neuromuscular diseases that can cause progressive weakness and breakdown of skeletal muscles over time.
“We knew from about six to seven months old that there was something going on with her development,” said Devlin. “She appeared to have low muscle cell, and she was smaller than the average kid, which impacted her motor developmental milestones like crawling and pulling herself up.”
This prompted Devlin and her husband Chris to consult with doctors and do testing to find out more about Penny’s condition. However, due to the overburdened state of the hospital system during the COVID-19 pandemic, Devlin said her daughter’s diagnosis “slipped through the cracks.”
“At the same time, it was becoming more apparent that there was something going on,” said Devlin. “She struggled to walk up stairs, she’d wake up with headaches in the morning.”
After a year of testing, a brain MRI, a visit to a developmental pediatrician and genome sequencing, Penny’s condition was uncovered.
Despite the challenges faced in her daily life, Penny is relatively healthy and continues to live her life happily, said her parents.
“She is a really happy and joyful kid. She still struggles with her gross motor skills. She takes the elevator at school, she’s not able to participate in sports and things like that,” said Devlin. “She’s starting to have more awareness of her condition and her limitations, which is challenging for her.”
Given the progressive nature of her condition, Penny could face other complications such as respiratory failure.
There is currently no treatment available for Selenon Related Myopathy SEPN-1.
And with an occurrence rate of one in two million, funding for research to treat SEPN-1 is minimal, said Penny’s parents.
With the continued efforts of Penny and her family to raise funds, however, that reality could change. So far, the Penny’s Promise has raised just over $250,000.
For Devlin, funds raised for Penny’s Promise is a small step in the right direction towards finding a potential cure for SEPN-1.
“We have raised over a quarter of a million dollars which is great, but it’s like a drop in the bucket when it comes to medical research, which costs millions of dollars to do,” said Devlin.
The Penny’s Promise event at the Toronto Beach Club (1681 Lake Shore Blvd.) will take place from 7 p.m. to 1 a.m. on Nov. 15.
This is the second year for the fundraising gala, but the Devlin family wanted it to take place locally this year.
“We had a gala last year at the Centre for Social Innovation downtown. We had over 200 guests, and it was really a lovely night with live music and a silent auction. And this year, we’re going to be doing it within the community, hosting at the Toronto Beach Club,” said Devlin.
“We’re going to have a live Beach Boys cover band, which is in the theme of the Beaches, as well as a big silent auction, raffles, and things like that.”
A key recipient of funds raised at the upcoming event will be the Beggs Laboratory at the Boston Children’s Hospital, where Dr. Alan Beggs – North America’s leading SELENON-RM researcher – is working to develop a viable treatment to SEPN-1 using gene therapy. Beggs Laboratory is one of the only places in the world where Penny’s rare condition is being studied.
Devlin and her husband are hoping their funds raised for researchers at Boston Children’s Hospital will help the Beggs Lab get the potential treatment ready for clinical trials sooner, which could help Penny and other children with SEPN-1 get the treatment they need.
Funding will also be allocated to University College Cork in Ireland, where Prof. Ken O’Halloran and Dr. John Mackrill, some of the world’s leading muscular dystrophy researchers, are focusing their efforts on studying and testing new treatments for respiratory symptoms in dystrophic diseases.
Funds received during Penny’s Promise will also be looking to support other efforts to develop new therapeutics that could improve the lifespan and quality of life for those living with neuromuscular conditions.
To find out more about Penny and her condition, or to make a donation, head to https://torontofoundation.ca/pennys-promise-fund, or follow the Penny’s Promise Instagram at https://www.instagram.com/pennyspromisefund
