@uniquestarr2004gmail-com
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Kevin Schaefer replied to the topic Tap, tap, tap… is this thing on? in the forum Weekly Wins 2 weeks, 4 days ago
Is anyone else having issues? Feel free to message us or email me at [email protected]. Thanks!
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Kevin Schaefer replied to the topic Our First Book Club Discussion! in the forum Disability in Media 2 months ago
I love this discussion! My takeaway from the Harris/Miranda relationship is that I do like that there’s an open-ended layer to it. The “maybe someday” line gave me the sense that they would reconcile eventually, but for now, Harris needed the space. I really like her too, but I respect his decision.
One thing I really liked was the family dy…[Read more]
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Kevin Schaefer replied to the topic Jaco Arm? in the forum SMA Assistive Technology/Equipment 3 months, 1 week ago
Hey, Simone! I love my JACO arm and I write a lot about how I use it in my daily life. Check out this video that DeAnn and I did a while back.
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Kevin Schaefer replied to the topic The First Thing About You: novel about a kid with SMA in the forum Disability in Media 3 months, 2 weeks ago
I loved the book! I actually just had the author, Chaz, on the podcast. Listen here.
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Kevin Schaefer replied to the topic Thoughts On Aging? in the forum Adults With SMA 4 months, 3 weeks ago
Great discussion! I just wrote a column about this subject.
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Kevin Schaefer started the topic Day 31 of #31DaysofSMA: How to Become Successful and Independent in the forum 31 Days of SMA 2022 6 months, 3 weeks ago
Here is our final 31 days story of 2022! Thanks to all of our fantastic contributors this year.
Drew Richard shares his experiences with working and living independently and provides tips for others in the community. He attributes his determination and skills to his parents, who always believed in him.
Here’s an excerpt, “Lastly, prepare to…[Read more]
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Kevin Schaefer started the topic Day 29 of #31DaysofSMA: We May Have SMA, but We Are People Just Like You in the forum 31 Days of SMA 2022 6 months, 3 weeks ago
Keisha and Kea Molina are identical twin sisters with SMA and country music singers/songwriters. They share their story about acceptance, identity, and fighting to be seen in a world that often dismisses disabled people. Through their music, they hope to make others feel less alone and deflect stigmas about disability.
Here’s an excerpt, “Our…[Read more]
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Kevin Schaefer started the topic Day 24 of #31DaysofSMA: If We Fear the Unknown, We Overlook Opportunities for Happiness in the forum 31 Days of SMA 2022 7 months ago
Maddy Gunawan received her diagnosis of SMA Type 2 just before her second birthday. At the time, her parents faced a wealth of uncertainty. They had just immigrated to a new country, had their first child, and were thrown into SMA’s void with no support system.
In time, Maddy and her parents learned to adapt to life with SMA. She went to c…[Read more]
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Kevin Schaefer started the topic Day 22 of #31DaysofSMA: Her Condition Brought Us Closer in the forum 31 Days of SMA 2022 7 months ago
When Logan Mundy started his relationship with Arya Singh, he didn’t have much knowledge or experience with disability. Arya has SMA, and she was open about her needs when she and Logan began dating.
For Logan, he learned about the nuances of caregiving and accessibility, and these things brought him closer to Arya.
He writes, “Our routine a…[Read more]
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Kevin Schaefer started the topic Day 17 of #31DaysofSMA: Why I Have Vowed to Fight for Change in the forum 31 Days of SMA 2022 7 months, 1 week ago
Kyra Richardson learned early to advocate for herself. She dealt with medical trauma at a young age after doctors prescribed her a medication she was allergic to. In addition to the hospitalizations and surgeries, she had to navigate social situations and bullying.
Through these challenges, Kyra vowed to fight for change for herself and others…[Read more]
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Kevin Schaefer started the topic Day 16 of #31DaysofSMA: Why I Am Proud to Be Disabled in the forum 31 Days of SMA 2022 7 months, 1 week ago
Carli Lynne Hamilton was diagnosed with SMA at the age of two. Like many others at the time, her parents weren’t given much hope. And growing up, Carli struggled to accept her disability as a part of her identity.
As things changed and she embraced her life, she also came to embrace her disability. She’s now a wife and mother, and she takes…[Read more]
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Kevin Schaefer started the topic Day 15 of #31DaysofSMA: Living Through the Journey of a King With SMA Type 2 in the forum 31 Days of SMA 2022 7 months, 1 week ago
Zarek Elizondo is a 26-year-old living with SMA Type 2. He spent his younger years in and out of hospitals and had a hard time mentally and emotionally. However, he eventually developed a different mindset.
Here’s an excerpt, “As I got older, I started to grasp what SMA was and how it could affect my life long term. By age 13, the demonic words…[Read more]
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Kevin Schaefer started the topic Day 10 of #31DaysofSMA: I Am So Lucky That This Community Exists in the forum 31 Days of SMA 2022 7 months, 2 weeks ago
Amanda Hanki’s daughter, Harper, was diagnosed with SMA Type 1 two and a half years ago. Though adapting to life with SMA was overwhelming at first, Amanda was grateful that Harper was able to receive the treatment Zolgensma. Throughout her family’s journey, she’s found strength in the SMA community. Read their story here.
Here’s an excerpt,…[Read more]
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Kevin Schaefer started the topic Day 8 of #31DaysofSMA: On Being a Wife, Mom, and Caregiver for My Spouse in the forum 31 Days of SMA 2022 7 months, 2 weeks ago
Brittany Bingman knew she wanted to get married and raise a family from a young age. She dreamed of the kind of person she would marry and the life she would have.
While she did marry the man of her dreams, she took on an additional role that she didn’t envision. Brittany’s husband, Steve, has SMA, and she is his primary caregiver. She and…[Read more]
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Kevin Schaefer replied to the topic Day 2 of #31DaysofSMA: Facing My Challenges in Becoming a Mom in the forum 31 Days of SMA 2022 7 months, 2 weeks ago
Absolutely!
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Kevin Schaefer replied to the topic Day 1 of #31DaysofSMA: Surviving Law School While Grappling With Illness in the forum 31 Days of SMA 2022 7 months, 3 weeks ago
She has a focus on civil rights. @sgranby90 tagging you here.
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Kevin Schaefer replied to the topic Day 2 of #31DaysofSMA: Facing My Challenges in Becoming a Mom in the forum 31 Days of SMA 2022 7 months, 3 weeks ago
I love her story! We were on a panel together at the conference this year.
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Kevin Schaefer started the topic Day 3 of #31DaysofSMA: Instead of a Horse, I Got a Wheelchair in the forum 31 Days of SMA 2022 7 months, 3 weeks ago
Stéphanie Houvet has SMA Type 3 and lives with her parents in France. She writes about navigating adulthood, her education and career, and managing daily life.
When she was young, Stéphanie dreamed of having a horse and learning to ride. Instead, she got a wheelchair, which became a vessel of freedom and independence for her.
Here’s an e…[Read more]
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Kevin Schaefer replied to the topic Day 1 of #31DaysofSMA: Surviving Law School While Grappling With Illness in the forum 31 Days of SMA 2022 7 months, 3 weeks ago
It’s a great story. I enjoyed meeting Shaniqua and many other contributors this year at the conference.
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Kevin Schaefer started the topic Day 1 of #31DaysofSMA: Surviving Law School While Grappling With Illness in the forum 31 Days of SMA 2022 7 months, 3 weeks ago
Hey everyone, and happy SMA month!
We’re excited to kick off our 31 Days of SMA campaign with Shaniqua Granby’s story. Shaniqua writes about her experiences in law school, and how she managed life with SMA. With the support of family and friends and with a spirit of determination, she was able to pursue her dream.
Here’s an excerpt, “Thus, a…[Read more]
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