Over the past several months, DSAMn has been actively collaborating with healthcare providers to expand and enhance comprehensive care for individuals with Down syndrome. We are thrilled to announce a significant milestone in this effort: the opening of two new pediatric Down syndrome clinics.
The Children's Down Syndrome Clinic officially opened its doors on October 18th, and Gillette's Down Syndrome Clinic is scheduled to open on November 15th. These new clinics, along with M Health Fairview's pediatric clinic, mark a major achievement. Having high-quality healthcare options available for patients with Down syndrome at all of the state's major pediatric healthcare systems is a significant accomplishment and a reason to celebrate. We've included more information about each clinic, including how to make an appointment, in this email.
Our work is not done. Individuals with Down syndrome are now living into their 60s and there are currently no clinics dedicated to serving adults over the age of 25 in Minnesota. Addressing this gap is our highest priority as we move into 2025. We recognize the critical importance of providing lifelong, specialized care, and we are actively partnering with the Global Down Syndrome Foundation to find a sustainable solution. For parents and caregivers of individuals 26 and older, we've included information below and a link to help us advocate and move this work forward. Our goal is to establish a comprehensive care model that supports individuals with Down syndrome throughout every stage of their lives, ensuring that quality healthcare is accessible well beyond childhood.
Sincerely,
Sarah Curfman
President & CEO
Down Syndrome Association of Minnesota
sarah@dsamn.org
612-237-1919
The new Gillette Children's Down Syndrome Clinic provides comprehensive, multidisciplinary
care and support for individuals with Down syndrome from infancy through young adulthood (0-250. As a collaborative partner in this work DSAMn staff will be onsite working alongside the medical providers and social workers. With DSAMn and Gillette experts in the same appointment, we’re enhancing our ability to offer the best possible care and connect families with valuable community resources.
Where: Gillette - Phalen Clinic located at 435 Phalen Boulevard, St. Paul, MN 55130
When: Fridays 8AM - 1PM
Providers: Dr. Tori Bahr, NP Heidi Davis, Dr. Peter Ladner, and Dr. Uyen Truong
Request an appointment at gillette.mn/appt
What the Gillette Down Syndrome Clinic offers:
- Comprehensive Care: As a leader in genetic syndrome care, Gillette Children’s provides extensive medical, surgical, and rehabilitation services.
- Dedicated Support: A registered nurse care manager will coordinate all your child’s care needs and appointments.
- Community Connection: DSAMn is integrated into our clinic, attending appointments to help connect families with community resources.
- Quick Care Clinic: Available Monday to Friday for acute illnesses in established patients, staffed by pediatric complex care providers.
- Transition Support: We assist with the transition from pediatric to adult healthcare.
- In addition, the clinic can coordinate and connect with providers across Gillette to address common heath care concerns including:
- Hearing and Speech: Regular auditory exams and both in-person and virtual speech therapy.
- Sleep Apnea: Sleep studies and interventions like ENT evaluations, CPAP therapy, or Inspire devices.
- Joint Laxity and Hypotonia: Comprehensive care from our orthopedic, PMR, and neurosurgery teams for musculoskeletal and atlanto-axial concerns.
- Developmental Support: Early intervention programs and ongoing support for physical developmental challenges.
The Children's Minnesota Down Syndrome Clinic provides comprehensive care for individuals with Down syndrome from infancy through young adulthood (0-21). As a collaborative partner in this work DSAMn's family connectors will be onsite for consultation as part of our clinic visit.
Where: Children's Minnesota - Minnetonka Campus located at 6060 Clearwater Drive, Suite 220, Minnetonka, MN 55343
When: 3rd Friday of each month, 8AM - 5PM
Provider: Dr. Stella K. Evans
To make an appointment, call 651-220-5230
At Children’s Minnesota, we’re experts at treating issues that are more common in kids with this condition, including:
- Growth and nutrition: We help track your child’s growth, meet unique diet and nutritional needs and address feeding problems.
- Thyroid function: Testing and treatment for conditions in which the thyroid gland produces too much or too little thyroid hormone.
- Gastrointestinal issues: Management of constipation, diarrhea, acid reflux and food allergies.
- Vision and hearing: Regular screenings and treatment for eye and ear issues.
- Musculoskeletal development: We can address weak muscle tone and loose ligaments and promote healthy physical development.
- Sleep: Expert treatment for apnea (irregular breathing during sleep) as well as behavioral strategies to help your child settle in and sleep through the night.
Some Down syndrome-related problems require special handling. To help, we coordinate referrals to a wide variety of sub-specialists and specialty clinics, including but not limited to our cardiovascular program, physical rehabilitation program and the feeding clinic.
The Down Syndrome Clinic at M Health Fairview Masonic Children’s Hospital cultivates the health and well-being from birth through young adulthood of children with Down syndrome. We provide outpatient visits for the child and family, including prenatal visits, with review of the recommended healthcare guidelines for children with Down syndrome, as they pertain to each child. At these visits, we assess and monitor for signs of medical complications encountered by individuals with Down syndrome.
Where: M Health Fairview Pediatric Specialty Clinic located at 2450 Riverside Ave., East Building, 12th Floor, Minneapolis, MN 55454
When: Tuesdays 8AM - 12PM
Provider: NP Sara Elsbecker
To make an appointment call 612-365-6777
What about adults over 25?
There is still much to do to establish a comprehensive care model that supports individuals with Down syndrome throughout every stage of their lives. Optimal prevention and causes of common diseases in adults with Down syndrome remain poorly understood; more preventive healthcare is needed to support healthy aging; and limited access to care, diagnostic overshadowing, and communication challenges can leave specific medical issues undetected.
DSAMn is committed to improving access to and quality of healthcare for adults. This is a priority for 2025 and beyond. We are working with Global Down Syndrome Foundation to approach Minnesota-based healthcare systems about the creation of an Adult Down Syndrome Clinic. To aid this work, we are collecting stories about healthcare experiences and gaps in care to support our work to establish an adult clinic. If you would like to share your story, please click HERE.
If you ever have questions, ideas, or concerns, please reach out.
Email: sarah@dsamn.org
Main Line: 651-603-0720
Mobile: 612-237-1919
For more info about the Down Syndrome Association of Minnesota, visit dsamn.org.
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