Guest Post

Maureen Alderman, member of the Rare Disease Advisory Council and mother of Caroline, a child with a rare disease writes about the need for recognition and support. From the post: On February 28, we are so excited to celebrate Rare Disease Day. A day to reflect on what these patients have overcome. A day of gratitude for every doctor, physician assistant, nurse, lab tech, and medical professional that has touched the lives and futures of Rare Disease patients. A day to celebrate the research and developments going on in the Rare Disease community to create further treatment options. And maybe most importantly, a day of awareness for those not immediately impacted by Rare Disease.

For many people with disabilities, it is challenging to find affordable and accessible housing. Even when available, the level of accessibility may not meet their needs. In Minnesota, there is no consistency when building accessible housing. Julia Page, Public Policy Director for The Arc Minnesota, shares a policy change that would ensure housing built with state dollars works for everyone.

The Minnesota Council on Disability continues to celebrate National Disability Employment Awareness Month (NDEAM). Poppy Sundquist, an advocate from Saint Paul, shares a perspective on disability and employment. Poppy writes about finding on-the-job adaptations that work, dealing with transportation challenges, and being your own advocate.

Jules Edwards, co-founder of the Minnesota Autistic Alliance, writes about how stories of autism are often portrayed as either being full of hardship or used for inspiration and are frequently told from someone else’s perspective. Jules explains that being Autistic is not all sunshine and rainbows, nor is it doom and gloom. It can, in fact, be joyful.

The Minnesota Council on Disability supports maintaining the work of the subminimum wage taskforce. The Arc Minnesota’s CEO, Andrea Zuber, has written a great post to ensure there is no confusion about what the task force does and why it is important for Minnesota!

Erica Barnes, administrator for the Chloe Barnes Advisory Council on Rare Diseases, writes about Rare Disease Day. Erica shares her personal story, the barriers people face in the rare disease community, the importance of equity, and more!