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Ashly Pinioin, Co-chair, Houston Network Group
Hello friends! I am Ashly Danielle Pinion, born on April 22, 1987. I married my husband, Jason, in 2008. We recently bought a home in Humble, Texas. I was diagnosed with Marfan syndrome at the age of 12. My father also has Marfans. At diagnosis, I had an aortic dilation of 3.7. In February of 2011, my dilation reached 4.7. I was slated for surgery on April 20th, when I had my ascending aortic route and my aortic valve replaced. I also had a complete pectus excavatum repair and currently have a stainless steel bar bolted to my rib cage. I believe my surgery has made me stronger, and has motivated me to educate myself, as well as others. I have developed a passion to help others who are dealing with Marfan related syndromes. I am particularly interested in sharing my experience in a constructive way with young children and teens, and look forward to creating programs that will encourage them to deal positively with their health and build a community of friends. Awareness is key at any age, as it opens the opportunity to learn how to manage your health care and cope with this condition successfully.
Contact Information:
ashlypinion@gmail.com
(832) 596-8110 |
Description of the Group
The National Marfan Foundation Houston Network Group is a local support group of the Greater Houston area. We meet a minimum of once monthly and welcome people with Marfan syndrome and their families. There are several aspects of the Houston Network Group that are addressed in a variety of meetings and socials throughout the year.
- Our group provides its members with peer support. You will have a chance to make peer connections which can be very healing as many people will relate to and understand your worries and experiences with Marfan syndrome.
- Our group is committed to providing a veriety of educational workshops with Marfan experts and activities that promote proactive management of Marfan syndrome. Note: We work to provide current information and resources on Marfan syndrome as well as Loeys-Dietz.
- Our group is committed to improving community awareness of Marfan syndrome. If you are interested, there are several group and individual volunteer opportunities as well as fundraising opportunities that will allow you to do such work.
Group Contact Information
If you would like to receive more information on the Houston Network Group, simply email Leah at nmf.houston@gmail.com.
Hope to hear from you soon!
Description of the Telephone Support Contact
Our Telephone Support Contact provides peer-to-peer support connections for the Greater Houston area. She is available to offer her own experience living with Marfan syndrome or a related disorder, as well as messages of hope, as a source of support to others.
Telephone Support Contact Information
Contact: Pamela Bryson
Phone: (281) 859-3034
email: brysonpa@hal-pc.org
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