Southwest Florida PSP, MSA, CBD 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.  

 

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 hundreds of people dealing with 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. 

 

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. 

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CYNTHIA MACDONALD, SUPPORT GROUP FACILITATOR

The group meets on the second Saturday of every month at 2:00 PM - 3:30 PM

                 Due to COVID19, our in person meetings have been cancelled. 

               We now have Zoom meetings instead on the second Saturday of                                     every month but hope to start in person meetings soon.  

                         For details contact:  Cindy MacDonald

                                     Phone:  239-353-3960  

                               eMail: cmac5371@aol.com