Daily Inspiration: Meet Sarah Krieger

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

Hi Sarah, please kick things off for us with an introduction to yourself and your story.
On February 9, 2017, our life was turned upside down when our youngest son Fritz was diagnosed with Duchenne Muscular Dystrophy. Duchenne is a very progressive rare disease that takes away boys ability to walk between the ages of 7-12, restricts the use of the upper limbs in their teens and affects the most important muscle, the heart causing boys to not survive their late teens/early twenties. As we digested such devastating news, we found ourselves feeling weak and helpless. It was in those dark days of diagnosis, 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 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 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…. STRENGTH IS MORE THAN MUSCLE™.

I’m sure you wouldn’t say it’s been obstacle free, but so far would you say the journey have been a fairly smooth road?
The nonprofit part of our journey has really been quite smooth, with few hiccups. The support and love from our community has been unmatched. Even during a world pandemic, we managed to hold successful online fundraisers to help our continual funding of pivotal research. In terms of the medical side of the diagnosis, it has been far from easy. It’s one thing to grieve and wrestle with such a diagnosis, but as if that wasn’t enough, there are continual hurdles in navigating a rare disease such as: learning the language and science of the disease, fighting insurance for coverage on necessary medications and equipment, navigating clinical trials, learning that your child is ineligible for promising treatments, traveling to doctors appointments across the country, managing the diagnosis with siblings, finding accessible activities that we can all do, and the constant advocating whether in doctor offices or with strangers can become exhausting.

Thanks – so what else should our readers know about your work and what you’re currently focused on?
Our nonprofit is a family effort, yes we have a board and all the legal entities of having a 501c3. However, our family is the heartbeat of this organization. And as much as we want to fund research to save our son and so many others fighting this disease, we also want to give the world a peek into the new lens that we now live life through. A diagnosis such as Duchenne has uprooted what we thought we cared about, changed our priorities and helped us live more fully. We are proud of our family motto and want to share it with others. So regardless of one’s physical abilities, everyone can proudly say they are strong, because STRENGTH IS MORE THAN MUSCLE™!

On a more professional level, 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 late 2021. We are very excited about this endeavor and we have a renewed sense of hope for the first time since diagnosis.

Any big plans?
As mentioned previously, Cure Rare Disease, the Biotech Nonprofit we work together with, is looking to dose their first patient who too lives with Duchenne, with Fritz coming close behind. The process of developing a customized drug takes about 2-3 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.

Pricing:

We sell various items with our message “Strength is More than Muscle™” to help raise awareness and funding for customized therapies. 100% of the proceeds from each item go to support our work. You can check them out on our website!

• Shirts: $15-50
• Hats: $20
• stickers: $5

Contact Info:

• Email: info@fritzandfriendsdmd.org
• Website: fritzandfriendsdmd.org
• Instagram: @fritzandfriendsdmd
• Facebook: @fritzandfriendsdmd

Image Credits
Sarah Krieger