Moving Mountains for Max: How a Facebook Group Helped a Mother Fund a $2.8 Million Drug for Her Son
Neighbors used auctions and bottle drives to help a mother raise money and influence government policy.
Max Parker’s prognosis was grim. Born in January 2017, Max had been progressing on schedule. Then he stopped putting weight on his legs, collapsed often, and arched his back when being held. In November 2020, Max was diagnosed with spinal muscular atrophy (SMA). Many children with SMA don’t live beyond two years.
A new drug called Zolgensma can help children, but the one-time gene therapy costs $2.8 million CAD. To pay for the treatment, Bryarly Parker, Max’s mother, created a Facebook group that raised over a million dollars in the span of four months. Her online advocacy led the Canadian government to approve Zolgensma for use and led to the province of Alberta paying for Max’s treatment.
SMA is a genetic disorder causing loss of the motor neurons used by skeletal muscles to coordinate movement. The most common form of the disease, chromosome 5 SMA, is caused by a deficiency of the motor neuron protein SMN. Though symptoms of SMA depend on the type and age of onset, a common symptom is weakness of voluntary muscles. The earlier the onset, the greater the impact on motor function. SMA is one of the most common genetic causes of infant mortality in the United States, affecting 1 in 6,000 children. In 2016, the FDA approved the medication Spinraza as a treatment for SMA, which targets RNA to increase production of the SMN protein. More recently, in 2019, the FDA approved Zolgensma, the first gene-replacement therapy for a neuromuscular disease. A one-time treatment, Zolgensma delivers the SMN gene to the body, addressing the genetic root cause of SMA.
Roughly 40 groups on Facebook serve SMA patients and caregivers. Some provide support and advice whereas others focus on disseminating research about treatments like Spinraza. Other groups detail experiences regarding physical therapy for SMA patients or have specific groups for the particular types of SMA.
After Max’s diagnosis, Parker sought information in various Facebook groups and began to connect with other parents of children with SMA. As Max’s story began to spread in Parker’s neighborhood in northern Alberta, she began receiving messages from neighbors and local families saying they wanted to help Max. Parker’s neighbors started Moving Mountains for Mighty Max! one week after Max’s diagnosis. The goal was to allow people in nearby northern Alberta interested in donating household items to do so by posting about them in this Facebook group. All proceeds would help pay for the Zolgensma dose before Max turned two, a timeline dictated by clinical studies of the drug’s safety and efficacy.
Parker became an administrator shortly after the group’s formation to “fill in the gaps” on questions about Max and auction logistics. She explained via a phone interview that today her administrative role largely consists of “directing people to the right spot” in terms of specific fundraisers or auctions that happen within the group. As of April 2021, there are more than 4,300 members and more than 10 posts made per week.
One particularly effective fundraiser, popular since the group’s inception, has been drives to collect and recycle plastic and glass bottles — over $100,000 CAD has been raised through bottles that bring in 10 cents per bottle, which Parker said is “quite incredible.” Online auctions have also played a significant role in the group’s fundraising. Currently, the scope of items includes apparel, portraits, graphic novels, and vacations. Various companies near Alberta have donated their items for Max’s cause. Parker said that it’s “very interesting” to see “how far our experience reached,” since so many strangers were able to join this cause through the group. As of April 2021, online auctions have helped raise over $100,000 CAD to support Max’s cause.
In addition to fundraising through Facebook, the family has used a GoFundMe fundraising page to raise more than $1.1 million CAD as of April 2021.
“[I] wouldn’t have been able to do [this] without social media,” said Parker. Looking at the hundreds of likes and comments on videos updating members about Max’s status posted to the group, Parker often has “no idea who these people are, yet they are still cheering him on.”
Many people with no connection to the family have supported Max. In December 2020, Leslie Miller passed away in an accident in the Fairview area of northern Alberta. There was an outpouring of sympathy and offers of aid to cover her funeral expenses. As her funeral costs were covered by insurance, Leslie’s family instead started a GoFundMe to ask for donations for Max. As of April 2021, more than $12,000 CAD has been raised through this fundraiser. In January 2021, Ryder Gough, a boy from Alberta, decided to skip having an 11th birthday party. Instead, he hosted a bottle drive, which raised over $700 CAD. Parker said support like this have been truly “humbling” experiences for her and spoke of her gratitude for all these people supporting Max’s cause.
Parker and the Moving Mountains for Mighty Max! group have been active in advocating for the approval of Zolgensma in Canada and securing provincial funding for the treatment. Parker drafted an advocacy letter explaining Max’s story and his desperate need for approval of the Zolgensma treatment in Canada as well as federal funding for the $2.8 million CAD drug. She set up a simple, one-click system where people could send her letter to Members of Legislative Assemblies (MLAs), Members of Parliament (MPs) in Max’s province, and the Alberta Minister of Health. After posting in the Moving Mountains group for members’ help in sending this letter, Parker was amazed by the response: “some days over 1,000 emails [were sent] just from members on the Facebook page.” These efforts bore fruit when Max got approval for the Zolgensma treatment in Canada on February 23, 2021, with the province of Alberta providing the full $2.8 million CAD for the treatment.
Max received his dose of Zolgensma on March 16. Parker’s hope is that with this treatment, Max will “be a lot stronger, even be able to walk on his own.” While Parker is hopeful, she acknowledges that there are challenges ahead. As Zolgensma is a new treatment, doctors don’t know what the effects of the treatment will be 20 or 40 years in the future. Moreover, Zolgensma isn’t a cure for SMA that reverses its effects but a treatment that stops the disease’s progression.
“[I] fought for something we believed would be the best for our child, in a time where it wasn’t accessible,” Parker said. She realizes that there is a long road ahead, but she still “hope[s] for the best” amid all the uncertainty surrounding Max’s treatment.
With Alberta funding Max’s Zolgensma, Parker said that the more than $1.1 million donated to fund his Zolgensma treatment will instead be used to support other children with life-threatening diseases. Parker has been working with a nonprofit that is raising money to provide funding for medical treatments for kids like Max who suffer from several debilitating diseases, including SMA. Max will also need special, expensive equipment that isn’t funded by the Canadian government until he learns to walk on his own. With the donors’ approval, Parker hopes to cover some of this equipment as well as Max’s physiotherapy, which he will likely need for the rest of his life.
As a parent, it was “a very difficult decision” for Parker to put “the life of [her] child on the Internet.” She has shared personal stories online that others normally wouldn’t. She “just felt obligated to reveal a lot,” she said. Yet, she is thankful for the role that social media and this particular Facebook group have played throughout her journey to obtain Zolgensma for Max. She described the “amazing support” of people from all across the world and their willingness to help to save the life of her child. During COVID-19’s darkness, Parker believes Max’s case was a “feel-good story” that people grew attached to quickly. “I’d be happy to provide fundraising and advocacy advice for families that may be in similar situations, no matter the disease,” Parker said. She hopes that other parents caring for children with debilitating diseases will use her example to gain hope and confidence, knowing that there are others out there fighting for their child’s life as well.
