We had the good fortune of connecting with Sarah Krieger and we’ve shared our conversation below.

Hi Sarah, how does your business help the community?
Our organization works to fund a new, innovative way of developing life-changing therapies for those living with Duchenne Muscular Dystrophy, as well as other rare diseases. We have partnered with a non-profit Biotech called Cure Rare Disease. Together we work to create a way for the rarest of rare disease patients to have an opportunity at therapies that wouldn’t otherwise be available to individuals. We are honored to help raise money to develop customized therapies for individuals that would be forgotten and left behind. The idea of developing drugs for N of 1 or a N of a few individuals has really never been done before. Our hope is that these efforts will not only help rare disease patients receive life-saving treatment, but we will create an ecosystem that will allow for more and more rare disease patients have a chance at individualized treatment. Right now, most rare diseases have no treatment or cure. Parents are told to go home and just love their child. We are working to change this prognosis and give those diagnosed with a rare disease more hope for the future!

Can you open up a bit about your work and career? We’re big fans and we’d love for our community to learn more about your work.
I have worked as the director of community engagement at Cure Rare Disease for a year and a half. Cure Rare Disease is a Boston, Massachusetts-based non-profit transforming possibilities for people with rare diseases by developing customized therapeutics to save lives.

My role, and the demands of this position, have evolved in many different ways over the past 18 months, and continue to change as Cure Rare Disease grows. When I started, we were only interacting with a few families in the space, and it was necessary to figure out what our role with families was going to look like moving forward. As we’ve grown and now communicate with more families, we’ve really developed our ability to direct and support them within our goals as a non-profit organization. My goal for this role in the future is to continue to educate families about our approach to drug development, in unique and honest ways, while finding the best approaches to involve and educate them in the process. I want to always improve our infrastructure to continually help our families understand, in real time, where their loved one is in the research and development process, but also assist in scaling and growing the personalized gene therapy program as a whole.
I like to view my role as a bridge. Often a rare disease diagnosis leaves one feeling alone and isolated; there are so many decisions to make, yet one can feel stranded when making those decisions. My job is to connect the patient and their family to whatever it is they need, because no one should feel alone when navigating rare disease. Sometimes, it’s connecting a newly diagnosed family with a clinician, sometimes connecting one family with another that have kids the same age, or a family who is starting the process of building a wheelchair-friendly home with a family that already has done that, or it might be connecting a family in our development process with the researchers who are working on a therapy for their loved one.
I love learning, and often my job is best done when I am listening. Being able to provide people with a safe place to share their rare disease story and often comforting them through their fears and challenges isn’t always easy, but is so needed. The world of rare disease is very diverse, and I continue to be inspired by all the parents and families I meet that are doing all they can to bring change to the current prognosis of varying diseases. It’s always rewarding to know that no one is alone in this fight, and we all desire and are working toward one thing – to bring life-saving treatment to the ones we love.

If you had a friend visiting you, what are some of the local spots you’d want to take them around to?
We love downtown Mesa. From ice cream, to the park, to several different breweries, in addition to so many cute little shops its easy to find something people love. We also love exploring our beautiful desert. We live in such a unique and beautiful place and love exploring it. From the salt river, to Usery and Lost Dutchman State parks, we love showing off the desert to any visitors with a hike.

Who else deserves some credit and recognition?
Our family and overall community continues to be the reason we can do what we do. The funding our donors continue to provide is making the difference in us being able to develop a customized therapeutic for our son and other boys living with Duchenne Muscular Dystrophy. We are also honored to work with Rich Horgan, and other staff at Cure Rare Disease. Their tireless efforts in bringing patients to the table along with top clinicians and scientists to develop life-changing therapies it why we are able to do what we do.

Website: www.fritzandfriendsdmd.org

Instagram: @fritzandfriendsdmd

Facebook: https://www.facebook.com/pg/FritzandFriendsdmd/

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