Kansas City Area CMTA Branch | Resource Directory | Charcot-Marie-Tooth Association

Resource Directory

Kansas City Area CMTA Branch | Resource Directory | Charcot-Marie-Tooth Association

The Kansas City Area CMTA Branch is for those who have Charcot-Marie-Tooth disease and their loved ones. We welcome you to join this vibrant group of active and caring individuals in your area to share resources, ideas, CMT-related information, and personal experiences and to, ultimately, build life-long friendships and support. Meetings will focus on CMT education, awareness, research updates, fundraising initiatives, advocacy, and current events and will include guest speakers. We love newcomers and hope you will join us at our next meeting!

Don't forget to RSVP for our upcoming meeting in December! Saturday, December 15th from 10:30AM-12:30PM! Please RSVP via the CMTA Kansas City Area Branch Facebook group, or by emailing me at cmtaKC@gmail.com. The meeting will feature a neurologist who was a special visitor at our last meeting, Dr. Hristelina Ilieva of St. Luke's Neurology Clinics!
Her presentation will include the topics: 1 - Quick review of types of hereditary neuropathies. 2 - This year approval of 2 anti-sense type medications for a type of hereditary neuropathy called familial amyloid neuropathy (FAP) caused by mutations in a gene TTR (transthyretin). 3 - Are similar anti-sense approaches on the horizon for CMT1a ? 4 - Strategies that may be feasible for CMT2a. Location and parking info: Saint Luke's Neurology Clinics 4400 Broadway, Suite 520 Kansas City, MO 64111 Clinic: 816-960-7600 The parking lot is free and is attached to the building. The clinic is on the 5th floor where they will have somebody meet attendees in the lobby and direct them to the meeting room. Dr. Ilieva says, "There is major renovation on the facade of the building going on, so they will quickly recognize it from far. That has not stopped us from working while renovation is going on. There are wheel chairs available if somebody will need them, but will need to know about it so we can bring them down." So if anyone needs wheelchair access, please let me know ahead of time so I can communicate that with her people. See you there!

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Meet the Branch Leaders


Tammy Adkins

Tammy is from Parsons, Kansas, located in the southeast corner of the state. She is the mother of Co-Leader Aron Taylor who was the first and only family member to be diagnosed with CMT in 1985. Tammy, a labor and delivery nurse, and her husband moved to Lawrence, Kansas, in 2015 to be near their children and grandchildren. They are in the process of building a house on their 80-acre farm, where they currently have two horses and plan to have other farm animals and grandkids soon.
aron pic

Aron Taylor

Aron is from the small town of Parsons, Kansas, but has lived in the Kansas City area for the past 10 years. He was diagnosed with CMT in second grade, but was able to keep playing varsity baseball as a pitcher and infielder up until a foot injury sidelined him after his senior year of high school. Today, he continues to struggle with stairs and occasional falls, but feels fortunate that his CMT is still fairly mild. Aron's favorite hobby is music production, and he has produced and released several hip-hop albums over the past 15 years, including CMT-related songs such as "The Life You Love" and "Supergimpin." Aron married his best friend in 2015 and looks forward to having children.

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