An Advocate Gains Independence:
Emily Shares Her Story:
I have SMA Type 2 and rely on people to assist me with all activities of daily living. I live with my parents, John and Nancy, and younger sister, Ginny. Rigby III is my service dog. He knows about 40 commands and is very helpful pushing automatic door buttons and picking up dropped items at work.
It was particularly devastating to lose the ability to feed myself. It was the one activity of daily living that I could mostly do myself. I found a device, called an Obi that I could operate independently. It brings food to my mouth and allows me to choose from different food items. I was very reluctant to ask for the Obi device, due to the cost. However, I submitted the paperwork, and it wasn’t long before I received an email that the Board had approved my request and the Obi device had been ordered!
I was – and continue to be – so grateful that everyone at the MDFF cares so much about my needs. The Obi gives me back that independence; I don't need to rely on my parents or a PCA to feed me.
Emily's Favorite MDFF Memories:
I think my favorite MDFF moment was the holiday party in the middle of the Great Recession. It was evident that a lot of people were really hurting financially. MDFF and the IFD gave every family a gift card for groceries and sent every family home with a basket of fresh fruit. I was moved by such generosity and thoughtfulness.
Another really meaningful time was an MDFF summer picnic more than a decade ago. Some women had sewn small quilts for everyone at the picnic, just big enough to go over the lap of someone in a wheelchair. The quilts obviously took a long time to design and create; they were beautiful! Every time I put mine on, I'm blown away by the fact that my quilt's creator cared enough about me to devote her time and resources to keeping me warm. It's yet one more example demonstrating how the MDFF genuinely cares about the well-being of people with MD.
What sets the MDFF apart from other organizations is that the MDFF focuses on clients and their family members as they are, rather than curing them. It's all about acceptance and providing clients with what they need to live their best quality of life.
More About Emily's Passion For Advocacy:
Emily is extremely active in disability advocacy. She has been on the Governor's Council for People with Disabilities and currently serves on the Mayor's Advisory Council on Disability. She is the first Director Emeritus of the Fair Housing Center of Central Indiana, a nonprofit organization that has had more than a $10 million impact on the local community in just 10 years. She is also a Graduate Liaison for Canine Convenience for Independence, the organization that provided her with her service dog, Rigby.