September 13, 2010

CMT is alive and well in Coal City Illinois!

My name is JoAnn Haase and a member of the Charcot-Marie-Tooth Association.

I remember, as a child, other kids making fun of the way I walked and ran. I just loved playing baseball but I was always picked last for a team. I failed high school gym 4 years straight! All my life I was the odd man out. In November of 2003 I finally found out why. I had CMT...and so did my daughter Ashley. While I felt great relief at finding an answer, my 16 year old daughter felt anger and denial.

Now here it is, 2010, and another family member has CMT. My sweet grandson Hunter, only 3 years old. It's painful to watch his frustration as he struggles to do things all 3 year old boys love to do. When he runs, he falls. When he walks, he falls. We go through a lot of Band-aids over here. Hunter will be getting his braces for his feet next week, he picked an outer space design, with lots of STARs of course! Soon he will be going to preschool, which will include physical therapy.

Hunter's illness has had a tremendous impact on my life, he's just a little guy. So grammy had a choice, sit around feeling sorry for Hunter, Ashley and herself, or do something about it!

I was already a member of the CMTA, however not an active one. Ashley and I went to our first Chicago area CMT Support and Action group meeting and jumped right in. In celebration of CMT Awareness Week our group is sponsoring "Reach for the STARs - Walk & Roll for the CMTA" on Saturday, September 25 at 10am. It takes place at Wolfe Wild Life Refuge in Oak Lawn. Hunter is very excited, he loves meeting new friends.

Then I thought, what can I do personally? Lucky for me, the CMTA already had the answer! The "Circle of Friends" program. It was very simple. I made a list of friends and family, wrote a brief letter about my family and CMTA did the rest. I decided to call my endeavor 'Hunter's Quest for the Cure". It's pretty cool, CMTA set up a web page just for Hunter. - www.cmtausa.org/hunter

I then decided to make a Facebook page for Hunter's Quest. In contains updates on Hunter, pictures, links, posts from his fans, and his web page address. He also appears in a You Tube video located on the Awareness Week website- www.weaethecmta.com. It will be available for downloading on You Tube, starting September 19.

I am filled with hope for Hunter's future, treatment and a cure are just around the corner.

Thank you for promoting CMT Awareness Week.

JoAnn Haase

ps you can reach me at 815-634-3697or finetuned65@yahoo.com