Kara Q&A: How to “support” a friend or family member that’s affected with Charcot-MarieTooth.

My name is Courtney Hollett, Fundraising Coordinator at the Hereditary Neuropathy Foundation. This time of year I count my blessing daily and wanted to share with you a Q&A session I had with a new supporter of HNF. Kara, like myself has many family members affected with CMT and I reached out to her to share her thoughts and advice about how to “support” a friend or family member that’s affected with Charcot-MarieTooth.

COURTNEY: Tell us about yourself Where you live? Favorite hobbies?

KARA: I grew up in Crystal Lake, Illinois and lived in Chicago for 5 years before moving to New York City. I currently live in Manhattan. I love to travel internationally and spend time with my family in the Chicago area–my Mom, Dad, two sisters, two brothers-in-law, and my favorite little munchkins — my niece Kenzie (4 1/2 years old) and nephew Jack (2 years old). I also enjoy photography, animals, and the great food, wine, and culture of NYC, including Broadway musicals and plays

COURTNEY: How are you affected by CMT?

KARA: My Grandmother, Mother, and sister have CMT.

COURTNEY: Why are you fundraising for CMT?

KARA: I’m fundraising to raise awareness and support CMT research efforts.

It is no surprise to me that CMT is often referred to as “the biggest disease you’ve never heard of.” Growing up, I always thought my sister had just inherited my Mom’s feet, muscular build, and coordination. My family had never heard of CMT. For years, my Mom and sister frequently sought treatment from doctors and podiatrists. It wasn’t until about 10 years ago that a podiatrist on staff told my sister about CMT during an office visit to an orthopedist for a knee injury. The information available on the disease at that time was limited. Even now, my family has seen several doctors who have never heard of the disease.

Hopefully raising awareness will help doctors diagnose the disease early, help to educate those impacted regarding different treatment options, ways to manage the disease on a daily basis (including understanding those medications that are contraindicated for those with CMT), as well as provide hope that current research will lead to a treatment for CMT.

COURTNEY: How has CMT changed your life?

KARA: CMT has significantly impacted my entire family.

Most recently, my sister underwent several major foot/ankle surgeries. It has been very difficult, both physically and emotionally, yet my mom and my sister continue to amaze me. My sister works each day to improve her strength and recover with two young children at home. Of course, my Mom and the rest of my family are right by her side.

After connecting with HNF and learning more information about CMT, I am more determined than ever to raise CMT awareness and contribute to research efforts to find a treatment or cure.

COURTNEY: If you care for someone with CMT do you have any information for others?

KARA: Be supportive and informed. Try to learn about the disease and don’t be afraid to talk about it. While it may be a difficult and emotional subject to discuss initially, if you care for someone with CMT, I believe that being open about it helps show your support and helps you understand and be sensitive to your loved ones’ day-to-day challenges.

For years, I have felt both upset that my mom and sister have CMT – and completely helpless. Becoming involved in fundraising efforts and helping to raise awareness has been the most effective and rewarding way for me to show my love and support. It has helped me to feel empowered and feel that I am doing something to make a difference in their lives and in the lives of others impacted by CMT.

COURTNEY: What’s a favorite quote that you think of often?

KARA: “Our lives are not determined by what happens to us but how we react to what happens, not by what life brings us but the attitude we bring to life.” —Wade Boggs