Meet Sarah Krieger of Fritz & Friends in Mesa

Today we’d like to introduce you to Sarah Krieger.

Sarah, before we jump into specific questions about the organization, why don’t you give us some details about you and your story.
My name is Sarah. I am a wife to Bryant and mother to Hans (7) Otto (6) Fritz (3) Ingrid (1). On February 9, 2017, our Family’s life was turned upside down when our youngest son Fritz, was diagnosed with Duchenne Muscular Dystrophy. Duchenne is the most progressive form of Muscular Dystrophy and has been referred to as the childhood form of ALS. Duchenne causes muscle to not regenerate, therefore over time boys with Duchenne lose the ability to use all muscles. It typically starts in the larger muscles such as the legs, causing boys to lose the ability to walk around ages 8-12. From there it progresses to muscles in the abdomen and arms, and lastly, it affects the most important muscle, the heart. Boys with Duchenne typically don’t survive their late teenprogressive s/the early twenties.

As we digested such devastating news, we found ourselves feeling weak and helpless. It was in that dark difficult time, that 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 created and clung to a new motto, ‘Strength Is More Than Muscle.’ A diagnosis of Duchenne does mean Fritz’s muscle will not work as they should, but we wanted him, and the world to know, that he can be strong, we can be strong, people can be strong because…. STRENGTH IS MORE THAN MUSCLE.

From there, we decided to take the leap and form a nonprofit. Duchenne affects so many parts of life, and we knew there could never be enough help and support to fight this terrible disease. Between my husband’s knowledge and skills with finances and taxes, and my hobby of photography, social media, and design; all of that on top of our INCREDIBLE COMMUNITY, we felt we had that we needed to run a 501c3 that could make an impact in the world of Duchenne. As of Nov. 2017, we were an official nonprofit, and through various events across the valley as well as the country, we have raised nearly $65,000 toward Duchenne research in efforts to find therapies to add length and quality to the lives of those living with Duchenne. In addition to raising money, we have spoken to 100s of people, sharing our message of redefined strength with communities by constantly encouraging and reminding all those we come in contact that they can be strong because strength is more than muscle! In addition to our nonprofit, my husband and I, along with my sister and brother-in-law also purchased a barbershop in downtown Mesa. The barbershop is called Fritz’s Barbershop, and it partners with our nonprofit to help give back to the Duchenne Community by raising awareness for Duchenne and also providing any boy living with Duchenne, along with ANY of his family members or caregivers FREE HAIRCUTS. The head Barber and shop manager is Daniel Dehoyos, Fritz’s Uncle.

Has it been a smooth road?
Short answer No. long answer No, and where do I even begin. We truly believe anything worth doing is typically not easy. We also are incredibly grateful for the community and support we have surrounding our family, we wouldn’t be where we are without them. However, having a child with a rare disease is an automatic ticket to the scariest, emotional, never-ending, roller coaster. Shortly after diagnosis, we received news that our insurance was no longer in partnership with the only Neurologist in the state that cares for Duchenne. We now travel to Ohio bi-annually for care for our son. We have chosen to fund research in the last two years with our money raised because time is not on our side. There is so much in the pipeline for Duchenne research, there are more clinical trials than ever before. Gene Therapy has the potential to be life changing for not only Duchenne but many many other Genetic Diseases(it was recently FDA approved for the SMA). However, we’ve learned it is not just as easy as Gene Therapy. At our first appt in OH with one of the Top Doctors in the field of Duchenne, we learned Fritz, (along with other boys with Duchenne) will not be able to receive this therapy as it is administered now in the trials due to antibodies that preexist in his body. Once again we were devastated. We had put our hope in the advances of medicine without fully understanding the complexities. We’ve learned, and are still learning that this is a big hurdle scientist are having to tackle as Gene Therapy becomes a more viable option for Genetic Disorders, and we know Fritz is not the only child with the antibodies. But as I said, time is not on our side, each day that goes by his muscles grow weaker, and we need research to advance faster than the disease progresses. We know that funding for rare disease research doesn’t grow on trees, and to make more progress, rare disease families and advocates have to do something!

Please tell us about your organization.
I don’t think we can take any credit for what has transpired over the past two years since our son was diagnosed. It is hard to explain the fight that is created within someone when their child is given a diagnosis like Duchenne. Not only is there this desire to fight with the energy you didn’t even know you had, but there is also this new perspective that you now see life with. And although we refer to Duchenne as this ugly monster, it has revealed to us the power of kindness and given us an appreciation for the smallest of gifts and abilities. I think what we are most proud of is the community of people that started this journey with us and gave us the confidence to move forward and do something more, as well as all those that have since joined us in this fight. It has been the most humbling experience to read a message from a stranger on Instagram and tell us that they want to help us fight and then watch them use their platform to host a fundraiser on our behalf. We have met some incredibly STRONG people that had never heard about Duchenne before our family, but made it their priority to help. We have partnered with CrossFit gyms, college sports teams, elementary schools, high schools, artists, sports facilities, all across the valley (and even all over the country) to encourage people with our message of strength as well as raise awareness and funds for Duchenne.

Our goal as a nonprofit is to not just raise money to give strength to Duchenne but to also share this new perspective we have on life. We strive to be as transparent as possible, sharing all the good things, as well as the difficult moments. Yes, we want to find a cure for our son, and all those living with Duchenne, but more than anything we want to educate, encourage, and increase the perspective of the people we meet. We invite them to learn and grow with us on our journey of saving our son’s life.

Let’s touch on your thoughts about our city – what do you like the most and least?
My husband and I grew up here in Phoenix, and never fully appreciated the beauty of the desert until we left AZ for college. After we graduated, we were both ready to move back to our beautiful state. We now enjoy raising our kids here and teaching them all about the unique things that make AZ so special. From the saguaros to the sunsets, from the brown dirt to the purple mountains. We as a family get out and enjoy every ounce of sunshine as much as we can. We often visit local preserves to hike and learn about all the plants and animals that can only be found here. And when we get a bit tired of the heat, or desert, we love being able to escape in just a short drive, to beautiful mountains to cool off. We love that there are endless places for our family to explore or even just play, and we are grateful for the beautiful weather that lets us do that for a big part of the year! I can honestly say that sometimes we feel overwhelmed by the number of options we have for “things to do” with our kids here!

We are big suns fans and are enjoying the fact that our kids are now getting old enough to enjoy watching and cheering on the SUNS with us. If I had to pick one thing that I like least, (outside of the summer duh) would be the traffic at times, and the pollution line I can often see hovering over our beautiful desert.

Contact Info:

• Website: fritzandfriendsdmd.org
• Phone: 4807343400
• Email: info@Fritzandfriendsdmd.org
• Instagram: @FritzandFriendsDMD
• Facebook: @FritzandFriendsDMD

Image Credit:
Sarah Krieger

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