Southwest Florida PSP Support Group

The first meeting of the Southwest Florida Support Group was held on Sat., March 31, 2009. Manorcare at Lely Palms was kind enough to give us a room for our meeting. The meeting was and still is co-facilitated by Mitch Kanefsky and Cindy MacDonald. There was six attending that first meeting. They decided to the second Saturday of every month to keep it consistent for everyone. Cindy MacDonald’s first connection to the CurePSP foundation started when her mother (with PSP), John (her significant other), and she attended the CurePSP Awareness Walk in January of 2005. That was the second walk that organizer Joan Reifler, who lost her husband to PSP, had executed.

Cynthia MacDonald

Suppot Group Facilitator

The support group came about shortly after Cindy’s mother, Dorothy MacDonald, passed away from complications of her PSP disease. Cindy started getting phone calls from people in the area who also had PSP. They got her number from the CurePSP call registry. She felt like she was being directed to start a support group. The group was her way to help the healing of the loss of her mom. Since she spent the last three years of her life at ManorCare, it was a perfect setting to have the meetings there.

Over a decade later we have supported and educated those afflicted, their families, and loved ones, who are dealing with their journey of PSP, CBD, and MSA.

After Joan Reifler held three walks, Cindy and Mitch took on the responsibility. Cindy and Mitch together with the help of members of the support group and CurePSP’s support, the walk has been very succesful over the years. People come from other states, Canada, and overseas. The support group continues to hold the CurePSP Awareness & Memorial Walk every year. They remember and honor those who have passed on from PSP, CBD, & MSA and raise money for CurePSP.

The support group continues to hold the CurePSP Awareness & Memorial Walk every year. They remember and honor those who have passed on from PSP, CBD, & MSA and raise money for CurePSP.

In The Beginning

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What others have said about our support group and our walks

Great Leadership is the key. It is all about personal touch with everyone in the group and reaching out when they are all in need of some very special help and TLC. It all comes from Cindy, Mitch and Christina and the HEART that they have dedicated themselves over the past 19 years. The monthly Zoom meetings are attended by about 20 log ins and all have questions and look for support. The leadership and all of the group are supporting our patients and caregivers helping them with their multiple questions and responses from many.

After my wife was iagnosed with PSP, our daughter in law went on-line and started researching support in the Naples area. She found Parkinson’s support, but she also found Cindy! She had a call with Cindy and then called us and told us about what a wonderful call she just had with Cindy! So we started a conversation with Cindy and joined the group. It has been a blessing and we learned so much from the others in the group; plus we began to see and feel “the heart” of the group — demonstrated continuously and without reservation by Cindy, Chris, and Mitch.

We feel the love from everyone in the support group and at the Walk. It is such a possitive feeling to know others care and are willing to share their journey with others.