Every year at Parker Baby, we take 10% of our profits on Giving Tuesday and give it to a nonprofit organization we think is making real, impactful change in the world today. This Giving Tuesday we are honored to support Sarah, her amazing family, and their nonprofit Fritz & Friends.
The last two years we've been able to support Hope House and Fussy Baby Network during Giving Tuesday, and it was nothing short of a blessing, so we can't wait to share with you the nonprofit for our 3rd year of Giving Tuesday!
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We asked Sarah a few questions about her nonprofit, and her responses touched our hearts. Read on to see why we love supporting Sarah, Fritz, and other families who battle Duchenne Muscular Dystrophy.
Hi Sarah! Can you tell us the story behind Fritz & Friends? What is DMD?
On February 9, 2017, our life was turned upside down when our youngest son Fritz, was diagnosed with Duchenne Muscular Dystrophy.
Duchenne is a rare, progressive muscle-wasting disease that occurs in about 1/5000 boys. It is a genetic disease, but in our situation, neither my husband nor I are carriers of this disease, making the cause of this disease occurring in Fritz completely spontaneous.
Duchenne causes Fritz’s body to not produce dystrophin, a key protein that helps rebuild muscle. Because his body is unable to produce this very important protein, his muscles are unable to get stronger, and actually become weaker over time. Boys with Duchenne typically lose the ability to get up off the floor and use stairs around the ages of 5-7. It continually progresses and typically leads to a loss of ambulation around the ages of 9-12.
Duchenne affects every type of muscle, meaning that in the later stages the disease attacks crucial muscles like the diaphragm making it difficult to breathe, the esophagus making it difficult to swallow, and the most important muscle, the heart. Boys typically do not survive their late teens/early twenties, and there is currently no cure.
In those early and very dark days post diagnosis, as we worked to digest such life-changing news, we found ourselves feeling weak and helpless. This was not how we envisioned parenthood, or life for that matter.
It was in those extremely difficult days, our community came alongside us and gave us strength. We experienced strength like no other, and it involved things like hugs, tears, prayers, hot meals, kind words, special notes; never physical muscle.
In those extremely raw days of diagnosis we realized that the word strength needed to be redefined. Inspired and uplifted, our family birthed and clung to the phrase, ‘Strength Is More Than Muscle™.’
A diagnosis of Duchenne does mean Fritz’s muscles will not work like they should, but we want him, and the world to know, that he can be strong, we can be strong, people can be strong because….
Fritz & Friends is a 501c3 nonprofit organization that was born about a year after Fritz’s diagnosis. Our nonprofit works to give strength to Duchenne by raising awareness, funding life-changing research, and teaching others about what we believe about strength!
What does Fritz & Friends support?
Our organization partners with a Biotech Nonprofit based out of Boston called Cure Rare Disease. I currently work as the Director of Community Engagement. Together we are bringing a new, innovative approach to drug development.
Instead of developing drugs for the ‘larger’ populations in the rare disease space, often excluding the rarest of the rare patients, like our Fritz; we are working to develop tailor-made drugs for the individual, for the rare disease patients that would otherwise be forgotten.
This process however comes at a high cost, as it’s never been done before. The money we raise goes directly to supporting the infrastructure needed to break down the silos in drug development, in efforts to make sure EVERY patient has an opportunity at a life-saving therapy.
Once this process is proven to be possible, we have plans to bring payers in to bring costs down in efforts to reach more patients. The first patient is expected to be dosed with a customized CRISPR based therapy in mid 2022. We are very excited about this endeavor and we have a renewed sense of hope for the first time since diagnosis.
What are you looking forward to most with Fritz & Friends and family?
As mentioned previously, Cure Rare Disease, the Biotech Nonprofit we work together with, is looking to dose their first patient who also lives with Duchenne, with Fritz coming ‘close’ behind. The process of developing a customized drug takes about 3 years.
Fritz recently completed a muscle biopsy as the first step in developing his customized therapeutic. From there, we will develop a mice model to continue to test the therapy.
We are very hopeful and excited about what something like this could do not only for Fritz, but for the entire space of Duchenne and Rare Disease. Our ultimate goal is to prove that this infrastructure would allow for other rare Duchenne patients the chance at treatment, as well applying the same concepts to other very rare diseases.
As a family we love to travel and have some fun trips planned in this upcoming year. A diagnosis like Duchenne completely changes the way in which you view and live life, and time is no longer something we take for granted.
Each year for us could look very different because of the nature of this disease, but also because of the research and science we are funding to change the current prognosis. We are very intentional about making the most of the time we have right now as a family, and jump at any opportunity we have to create lasting memories together so adventuring together has been a big part of that.
What is the best thing we can do to support your family and other families who struggle with DMD?
As mentioned above, we believe that Strength is more than muscle, and so there are many ways people have and can continue to be strong for our family and others facing the diagnosis of a child.
Strength is more than muscle, strength is listening, strength is learning, strength is helping fund life-saving research. Never underestimate the power of a listening ear, a simple donation, or a written letter. Again, it was those types of things that helped us come to realize that true strength is so much more than any physical feat.
Educate yourself about different challenges that families of disabled kiddos face. Expose yourself and your kids to kids with disabilities and differences so they aren’t fearful or scared of someone that may be different from them on the outside. Focus more on the strength they embody when they are kind to someone or share a toy, vs the how many touchdowns they score and races they win.
When we recognize strength is more than those physical accomplishments, our world becomes a more inclusive, productive place, which benefits everyone who lives in it.
Where can readers find you?
Our website is www.fritzandfriendsdmd.org
We are primarily on instagram @fritzandfriendsdmd
We are also on Facebook at @Fritzandfriendsdmd
Our readers are mostly mamas.
What are some of the biggest lessons you’ve learned as a mother about parenting and raising strong children? (We could all use your wisdom!)
I touched on it a little above, but my husband and I had always envisioned and prioritized the idea of raising strong children, and I don’t think we are alone in that. But if I’m being honest that idea was definitely rooted in a lot of physical things like sports, being that we both were lifelong athletes.
I dreamt of the day I would sign a kiddo up for soccer, or basketball, and I couldn't wait to watch them take a love to various sports like I always did. But a diagnosis like Duchenne can and does uproot thoughts like those, and like I said, it has forced us to view life through a completely different lens.
We still want/wanted to raise strong kids, but post- Fritz’s diagnosis we had to rethink what that might mean; hence the phrase Strength is more than muscle.
We preach this to our kiddos daily, and it has become the cornerstone of our parenting. A recent example of this was…My two older boys like to skateboard. The other day they were trying to ollie over a pvc pipe in the driveway. My oldest got it pretty quickly but my second born couldn’t quite do it. He kept trying and trying, while my oldest cheered him on.
For over an hour, he kept at it, with my oldest right there encouraging him and re-setting up the pipe each time he hit it. Then finally, HE DID IT and we all celebrated!
After the cheering was done I asked them what took more strength in this situation, the actual ollie itself, or the determination to not give up? And to my oldest… landing the ollie, or sticking around to cheer on your brother?
They both recognized that landing the ollie was easy in the grand scheme of things. And that it took more strength to stick with it and not give up. For my oldest, he realized the strength it took to stick around and support someone other than himself, because he considered going to shoot baskets or do something else he wanted to do.
I praised them both for their strength… and told them over and over that I was so incredibly proud of them, not because they landed their ollie, but because they showed a strength more than muscle ~ strength in their selfless encouragement and determination.
It's in these moments, I as a mom try to be super intentional about teaching and instilling in them lessons about true strength, and remind them that they are strong kids because of who they are and how they treat others, never because of what they accomplish.
And it's because of this perspective and way in which we run our home, that I can have similar conversations with Fritz. I love reminding him that he is strong (even though he can’t skate or play basketball like his older brothers) because he helped me pick up the living room without asking, or because he gave up a piece of his candy to share with a friend who didn't have any.
We do our best to call out the strength we see in our kids that isn’t tied to a physical accompaniment, but to traits and decisions that involve things like selflessness.
Lastly, in addition to focusing on and encouraging the things above, I have learned that raising strong kids does require me to be an example of strength. #strongmom.
At first this idea may sound overwhelming, but it’s important to recognize that a strong mom is not necessarily one who is this beast, who hits the gym daily for several hours, or a mom who appears to have it all together (regardless of what you see when you see that hashtag).
A ‘strength-is-more-than-muscle kind of mom' is one who is strong because she apologizes when she loses her temper with her kids and asks for forgiveness for the moments she wasn't as patient as should have been. A truly strong mom asks others for help when she needs it, admits when she was wrong, and makes it a priority to care and make time for herself.
True strength doesn’t equate to some major achievement or skillset. True strength doesn’t mean perfection or that we don’t make mistakes. And it is because strength is more than muscle that we can all be strong moms who raise strong kids who, in turn, make this world a better place!
Donate to Fritz & Friends today and help fund the research that could save Fritz and others struggling with rare disease. Thanks for reading!