Our Board of Directors & Staff
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bby is a native to Denver, Colorado. After graduating from the University of Colorado, Boulder with a business degree, she went to work full time for the Research Institute at Children's Hospital Colorado where she was paired with Dr. Benke's team as a clinical research coordinator. During her time on Dr. Benke's team, she worked on several clinical trials for Rett Syndrome, most notably, the Acadia trials for Trofinetide, the first FDA approved treatment for Rett. Abby has since taken on a position at Children's Hospital with the Center for Cancer and Blood Disorders, and joined the RMRA Board to stay connected with the Rett Community.
Abby has previous non-profit experience having worked for both Make-A-Wish and the Children's Hospital Colorado Foundation. She also serves as a Young Alumni Mentor to students in the Leeds School of Business at CU Boulder.
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Carolyn Shaw
Carolyn is a Golden, Colorado native and a BSBA/MBA graduate of the University of Denver. With a deep commitment to community and philanthropy, she brings passion, enthusiasm, and extensive experience to RMRA as the Events Manager.
With many years in corporate banking and over 22 years building an IT integration business alongside her husband, Carolyn has learned that success stems from shared goals, a positive vision, and dedicated teamwork. Having been involved with RMRA for many years, she enjoys working with its incredible volunteers and the Risers4Rett community, where her husband serves as Director. Together, they strive to make a meaningful impact on those affected by Rett Syndrome, their families, and the Rett Clinic at Children's Hospital Colorado.
She finds her greatest joy in spending time with her family and enjoying the outdoors through hiking, skiing, fly fishing, and tennis. She also trains her Portuguese Water Dog, Riva, with the hope that Riva will one day serve as a cheerful Therapy Dog at Children's Hospital Colorado. Carolyn is proud of her two adult children, Austin and Adele, who share her passion for children’s philanthropies. Austin is actively involved with RMRA, while Adele, based in New York City, supports RMRA events whenever possible.
Joining RMRA allows Carolyn to combine her professional background with her dedication to helping children. She is honored to be part of the remarkable RMRA team and looks forward to contributing to the organization's growth and its support of the Rett Clinic.
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Dave or “Big Daddy” as he’s affectionately known, is a pillar in the community and has given his time and talents to many great nonprofit organizations through the years. He’s a long-time business owner focusing on the Technology Integration space.
Dave has been married to Carolyn for 32 years and has two awesome kids – Adele (20) and Austin (23). They are a fly-fishing family, with all four enjoying time on the water together as they travel the US to watch Austin’s collegiate hockey games or vacation as a family.
One of Dave’s great contributions to the Colorado Community is hosting Johnny’s Jamboree for the past 18 years. Each June, 175 Dads and kids (3 til their 20s) descend on Jefferson Lake campground to camp, shoot BB guns, play capture the flag, tell ghost stories and build memories for a lifetime. Many kids have learned a love for the outdoors from Dave’s unique and heart-felt efforts to provide an opportunity for Dads to build more loving relationships with their kids with nature as the backdrop.
Today, Dave helps to “herd the cats” of our Risers committee and loves being part of a grass-roots effort to make a difference for kids and families affected by Rett Syndrome. Learn more about Risers4Rett.
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Heidi, a Seattle native, recently moved to Fort Collins, Colorado with her husband, Rob, and two kids, (Rhys, 6 and Ellie, 11) specifically for their daughter, Ellie, who has Rett Syndrome. After Ellie’s diagnosis in 2017 they flew out to meet with Dr. Benke at the Rett Clinic at Children’s Hospital Colorado. After their appointment at the Rett Clinic they decided to move to Colorado to ensure Ellie had the best services, specialists and doctors that truly understood Rett. Something they were missing in Seattle. A year later they packed up and left all friends and family just for Ellie. It was a big move but the best decision they made for Ellie and their family. Before becoming a full time stay at home Mom for Ellie, Heidi worked as a Graphic Designer at multiple Advertising Agencies in Seattle and ended her career with eleven years designing for REI. She still does design work as much as possible but usually for free because she just loves doing it! Heidi is passionate about teaching the world about Rett Syndrome and helping kids learn about acceptance and love of everyone regardless of their differences. Heidi is excited to be part of RMRA and is eager to work with families to help unite our Rett community thru outreach, social media and events!
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Herndon was born and raised in Mobile, AL and after graduating from the University of Mississippi he landed back in Mobile, AL for a brief stint in commercial real estate brokerage with a retail focus along the Gulf Coast. After a quarter-life crisis, as well as a one-way ticket to Rio de Janeiro, he packed his bags and headed West and has been lucky to call Colorado home since 2014.
Herndon comes from a family of six and has a little sister, Rancey, that was diagnosed with Rett Syndrome when she was two. Herndon is just a few years older than Rancey and has seen firsthand how Rett can impact a family – both the negatives and positives.
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im joined the RMRA board once his youngest daughter was diagnosed with Rett Syndrome and saw firsthand the benefits provided by RMRA. He wanted to contribute to the many efforts of those passionate individuals who have supported those with Rett Syndrome. Jim has come full circle as he was born in Colorado, graduated with his Bachelor's and Master's degrees in Accounting from Brigham Young University, and worked in the Bay Area, Pacific Northwest and now in Denver. Jim is currently the Director of Revenue Accounting for a Fortune 500 company and has previous experience in serving as board member of a non-profit organization.
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Justin is a Video Systems Engineer in the Telecom space and has lived in Colorado for most of his life. He is married with three children, one of which has Rett Syndrome. Besides spending time with his family, Justin loves riding his Harley, boating, dirt biking and camping. As Metro State University of Denver graduate with a Bachelors in Electrical Engineering Technology, he mentors high school students in the FIRST Robotics program. Justin joined the board to help make a difference and do whatever it takes to find a cure for Rett Syndrome and improve the quality of life for his daughter
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Karin is an assistant professor in Biology at Regis University, with an academic background and interest in gene x interactions and their potential influence in neurodevelopmental disorders. It was during her postdoctoral research at UC Davis MIND Institute that her niece was diagnosed with Rett Syndrome. And 6 years later her own daughter was diagnosed (with a separate mutation) with Rett as well. Her drive has been to continue her research interest however within Rett Syndrome and bring more support to the patients and their families.
Outside of her academic position she loves all things outside; camping, hiking, snowboarding. Even more so is taking her three girls on adventures!
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Rick is a Colorado native who spends his free time enjoying much of what this beautiful state has to offer. He is a graduate of the University of Colorado-Boulder, and is the Managing Director of a Global IT Services and Recruitment firm. He has been instrumental in leading high performing engaged teams, scaling local services, and delivering technical solutions to many businesses across Colorado. Most importantly, Rick is a dedicated husband and father to 3 young children. Rick is passionate for raising awareness, support, and finding a cure for Rett Syndrome.
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Sarah Ahlstrom moved to Colorado with her husband, Sam and their three children, shortly after her oldest, Zoey, was diagnosed with Rett Syndrome. After a few months of living in Colorado, Zoey was seen at the Rett Clinic at Children's Hospital Colorado in Aurora. Sarah knew that this clinic was life changing not just for the individuals with Rett and related conditions but for their families as well. With a background in Emergency Medicine, Sarah has always had a desire to serve and help others. Sarah joined the RMRA Board as a way of helping others to connect and find needed support while balancing the complicated life with a loved one who has complex needs.
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Sarah was born and raised in Washington, but currently enjoys her sunny lifestyle in Arizona. She is currently a stay-at-home mom to 2 wonderful kids, ages 6 and 4. Her four year-old, Savannah, attends the Rett Clinic at Children’s Hospital Colorado. Prior to being a stay-at-home mom, Sarah was the head of an equestrian program at a boarding school for teenage boys with drug and alcohol addictions. Sarah enjoys swimming, camping, and training her horses; she shares her love of horses with her family.
Sarah is passionate about helping newly diagnosed families navigate the beginning of their journey with Rett. She dreams of a world where every child with Rett has access to life-altering technology. With the skills and hard work of her husband, she is currently driven to getting an adaptive switch into the hands of as many patients with Rett Syndrome as possible.
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Taking care of patients and families with Rett syndrome has always been a part and pleasure of my clinical career. I am pleased that RMRA has been able to make this happen with the Rett clinic and look forward to its continued success.
Position: Clinic Director, Rett Clinic at Children's Hospital Colorado
Email: tim.Benke@ucdenver.edu
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Tristen works as the Rett Clinic Nurse Coordinator in the Rett Clinic since 2013. She has worked at Children’s Hospital Colorado since 2009 in the Neuroscience Institute as a Neurology Nurse. When she isn’t chasing providers around clinic, she is chasing her kids around the yard at home or riding her bike. She loves working with all of the Rett Clinic families and helping them all feel loved and welcomed as they become a part of the program.
Position: Rett Clinic RN Coordinator | Neuroscience Institute
Phone: 720-777-7453
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Ursula grew up in Austria and immediately felt at home when she came to Colorado in 2001. Trained at the University of Economics in Vienna, she worked for various US companies and non-profits in marketing positions until she started her own consulting business in 2014. She is partnering with RMRA to ensure consistent branding and communication. Every social media post and every blog entry she writes about Rett Syndrome makes her respect Rett patients and their families and applaud them for navigating all the daily obstacles and difficulties. Having two daughters on her own, she hopes a cure for Rett Syndrome can be found in this lifetime.