We’re putting the volunteer spotlight on Kim DiBona this month. Kim’s started volunteering for Dysautonomia International after her daughter’s diagnosis. “The two and a half year diagnostic delay in getting diagnosed, the hundreds of tests and appointments, the 25 doctors who couldn’t figure out what was wrong… I couldn’t sit back and let other families go through that.”

Kim has volunteered her time on our Patient & Caregiver Advisory Board since the launch of Dysautonomia International in 2012. “There was only one Facebook support group back then. I hosted a few support group meetings at the beginning, and everyone was happy to be in a room with people that get it.”

She co-hosted her first fundraiser in 2013 with Dysautonomia International founder Lauren Stiles and other volunteers at the Stone Creek Inn, East Quogue, NY. “At first I was afraid to ask for donations and gift basket items, but after the first donation came to my house, it inspired me to keep going. So many family and friends donated.  Since then, it lit the fire for me to continue to hold annual fundraisers where we live in New Jersey.”

The thing that touches Kim the most is bringing the patients and their families together. “One specific moment I hold dear to me is connecting with a family from Panama at the annual conference. Knowing you make a difference in someone else’s life just by volunteering is something you keep with you forever. Those memories mean so much because I remember each and every face, each and every hug.  Another special moment was the first annual fundraiser I held in New Jersey, seeing my daughter look at the room full of people supporting her and other dysautonomia patients like her, and the money we raised for research. It gave her hope and showed her that lots of people cared.”

Kim is also very active and helps moderate Dysautonomia International’s New Jersey Support Group on Facebook. She is always so kind and helpful to other members in the community. The message that Kim would like to give to the dysautonomia community is, “[k]eep the faith, have hope.  We have come so far in these past eight years. There is so much more to be done, and we could use more volunteers. Every little bit helps. Educating doctors, small or large fundraisers, the resources are here to help you. Some people have asked how I do what I do. My response is, I am just a mom on a mission and there are lots of us.”

Thanks Kim for everything you do for our community!

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