A Message From Our CEO, Step Up 2024

Step Up for Down Syndrome season culminated with our event in St. Paul on September 22nd. It was a record setting day with over 6,000 attendees and just short of $500,000 raised. Our fundraising campaign for Step Up runs through October Down Syndrome Awareness month. Our lofty goal is $600,000. We would love your help to get there.

If you are asking, ‘what are we raising all of this money for?’ That is a very good question. Below, I have included a little bit more information about our plans and why we are trying to grow this walk to a $600,000 walk and this organization to a $1,000,000 organization.

I cannot express how grateful I am that I get to do this job every day. I cannot express how grateful I am for the entire team at DSAMn and the community of supporters and advocates like you. It is a gift to be raising a child with Down syndrome in this state, at this time, with DSAMn and the amazing network of organizations that support our community. While the stats and figures below paint a challenge we are facing as a community…I have so much hope…so much hope.

So grateful for you all.

Sincerely,

Sarah Curfman
President & CEO
Down Syndrome Association of Minnesota

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Why are we reaching for a million?

In 1983, the average life expectancy of a person with Down syndrome was just 25 years old. Today, it is approximately 60 years old. To put that significant change in perspective, the life expectancy of the general population has gone up 4.8 years in that same time frame. What does this mean?

First and foremost, this is incredible. People with Down syndrome are leading longer lives…but…are we prepared? Imagine having a child in 1983 and being told that child would live into their 20s. Now, your son or daughter is 41 or 42 years old; an age you never thought you would see. That's amazing and wonderful, but it is also not without challenges. As people with Down syndrome are living longer and aging, so are their caregivers. It's not uncommon for our team to get a call from an aging caregiver that doesn't know how much longer they can act as primary caregiver. It's not uncommon that we get a call from a sibling concerned about both their parent's health and their sibling's health. This dramatic shift is not something families were prepared for, or as a whole our society was prepared for. Systems need to change. Organizations need to change. DSAMn needs to change.

What's changing at DSAMn?

Tracy Hafeman, who many of you know, has been promoted to Senior Director of Child and Family Programs. She oversees and supports all programs for families with children ages 0-12. In addition, Kelly Fulton, one of DSAMn's dedicated Family Connectors, is now working with Tracy (along with still being a Family Connector) as the Coordinator of New Family Support. Minnesota's landscape is changing. Every child with Down syndrome qualifies for MA/MA-TEFRA and recently, barriers like parental fees have been removed. We know those first few years are critical. We know navigating this new world of being a parent to a child with Down syndrome is complex..and now have put additional resources where young families need them most. In addition, we are putting more resources into our Parent Groups (also under Tracy) and focused on launching TWO new pediatric clinics (one at Children's and one at Gillette). Both will be staffed by DSAMn team members working alongside the medical providers to connect and support families. There is always more that can be done...and we will continue to grow and innovate; but we feel more optimistic than ever about the resources we are investing in families from early childhood through school age.

What's working at DSAMn?

Our Family Connector Program is growing to meet the needs of families. It is hard to believe that the program is hardly three years old. I cannot imagine a DSAMn without it. The number of calls coming in grows by about 20% annually. I don't see a world where this changes. We need to continue to invest in staff and training to meet this rising need.

We have also invested quite a bit of time, staff, and resource into direct programming for teens and adults. We have nearly 80 hours of programming every month that builds skills, grows networks and friendships, and generally makes our teens and adults happier.

What's needed at DSAMn?

Our support for adults and caregivers of adults needs to match what's given to new families. The same care, support and programming given to families in those first few years of life needs to be given at the transition to adulthood and throughout the aging process. This is a new world with a new generation of adults and aging adults. For this reason we are fundraising to support our programs that already exist AND to hire a Senior Director of Adult Programs. This person will be Tracy's peer and counterpart, serving families from 13+ with a focus on adulthood and aging. We are looking for someone who has extensive experience serving adults, including older adults. We are looking for someone who can bring their expertise in housing, county services, and employment to the organization. Together...we will lead this organization to the next chapter.

With your help, we can say that we truly support families from birth THROUGH adulthood and aging. If you would like to support our work - donate HERE.

If you ever have questions, ideas, or concerns...I am here. Please reach out.

Email: sarah@dsamn.org
Main Line: 651-603-0720
Mobile: 612-237-1919
Looking for more information about Down syndrome or the Down Syndrome Association of Minnesota? Find us online at dsamn.org