Mom Crush Monday! Charlotte Schwartz, Galactosemia Canada, Foundation & Fundraising

Charlotte has an incredible knack for Pinterest quality DIY projects, she teaches community mom-and-baby fitness classes,  makes #weekworthoflunches, runs multiple marathons yearly, takes her kids on epic road trips and has  penned a children’s book (I know.) She is totally crush-worthy.  I have known Charlotte for nearly a decade – long before either of us had children. The last couple of years have been really challenging for her family, as her eldest son was born with a complicated and rare genetic disease. Even with these challenges, Charlotte and her husband Seth are incredibly positive people. With demanding careers, they still find time to do a remarkable amount for Galactosemia Canada – fundraising and helping gain exposure for families dealing with the disease. 

Parents: Charlotte & Seth Schwartz
Kids: Isaiah & Rivers Schwartz
Foundation Name: Galactosemia Canada in partnership with Sick Kids Foundation

What is the Galactosemia Research Fund? Galactosemia Research Fund is a dedicated fund supporting Canadian-based research, currently looking using MRS technology to assess how biomarkers may be connected to the neurological outcome experienced by many patients (i.e. speech and language delay, seizures, and tremors).

What is Galactosemia? Galactosemia is a rare genetic metabolic disease wherein the body cannot process or breakdown galactose – a sugar found mainly in milk and milk products- causing liver failure and brain damage at birth if not diagnosed. It affects 1 in every 60,000 births in North American and worldwide, the survival rate is just 25%. The disease also has many side affects, including primary ovarian insufficiency, mild to severe learning disabilities, speech, fine motor, and gross motor delays, seizures and tremors and cataracts, as well as other conditions.

How did the idea for the foundation come about? There is am American parent /patient advocacy group called Galactosemia Foundation. They are responsible for managing a conference held every other year in the US for patients and families of patients to attend to receive the most up-to-date information in terms of diet management, new research findings, etc. There is no Canadian equivalent and the resources of the American organization are restricted when it comes to expansion. My husband and I decided that there wasn’t time to wait, and though neither of us have run an organization like this before, we decided to register a Canadian equivalent in January 2015 which works in official partnership with Sick Kids Foundation, to promote awareness and raise funds right here in Canada.

What motivates you? Having a child with a rare disease is challenging, every day. This, coupled with the fact that its rarity dictates that even the specialists don’t know very much about it, because the sample group is so small, is frustrating. There are many, as yet, unanswerable questions, but lots of great research happening. The problem is that, like anything, the research requires ongoing sustenance (i.e. money) to thrive.

What is the most challenging part about parenting a child with Galactosemia? Our son suffers a number of side-affects of the disease, including speech, fine motor, and gross motor delay. He also has a diagnosis of Autism Spectrum Disorder and Global Developmental Delay. He requires private interventional therapy, including a speech pathologist and an occupational therapist, and because of his age (4) many of the issues we are dealing with as a family cannot yet be quantified. We don’t know what level of function we can expect from him as he ages.

What is your super power? Haha. My super power? Apparently I can run (on my feet) for really long periods of time without stopping. People will give you money if you do that for charitable causes!

What are you currently doing in terms of fundraising? How can we get involved? This year we will host three fundraising events: a) The Toronto 5K in support of Sick Kids and the Galactosemia Research Fund– a family-friendly 5K run / walk in Toronto on September 12th. b) The first annual Soy Boy Soiree at Amsterdam Brewery in Leaside on September 25th – a night of drinks, eats, talented comedians performing and a fantastic silent auction. c) During Thanksgiving weekend, I will run three marathons over three consecutive days from Toronto to Niagara Falls to promote awareness and raise funds.

Who are your supporting cast of characters? Galactosemia Foundation, Enjoy Life Foods, Ladies Learning Code, SkyZone Leaside, Amsterdam Brewery, Melissa Carmichael Photography, Sick Kids Foundation, Eaton Chelsea Hotel, Marvel Coffee Company, Uber, Labour of Love, Hip Mommies!

Want to help Charlotte out with her fundraising initiatives? Click here.