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Welcome to the web page of the National Marfan Foundation
Houston Network Group!!!
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Description of the Telephone Support Contact
Our Telephone Support Contact provides one-on-one telephone 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
Description of the NMF Houston Network Group
The National Marfan Foundation Houston Network Group is a local support group for the Greater Houston area. We are an active group and meet quarterly for professional meetings with local doctors who specialize in the management of Marfan syndrome and other related connective tissue disorders. We also provide activities twice a year for our affected children and teens, nurturing the development of a healthy social network at their very impressionable age. There are several support resources available through the NMF Houston Network Group. Here is what our group provides its members:
- Our group provides its members with peer support. You will have opportunities to make peer connections which can be very healing as many people can relate to and understand your worries and experiences with your connective tissue disorders.
- Our group is committed to providing a variety of professional meetings with Marfan experts and activities that promote proactive management of Marfan syndrome and related connective tissue disorders, such 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. Please email Leah at nmf.houston@gmail.com for more information.
- Our group distributes a Medical Resource List. This list includes doctors in our area who have provided exceptional care with patients who have Marfan syndrome or a related connective tissue disorder.
***If you have an interest in learning more about the NMF Houston Network Group, please email Leah at nmf.houston@gmail.com. Hope to hear from you soon!
Meet Our Group Leaders
Leah Goodman
NMF Houston Network Group, Chair
Hello everyone! I began leading this group in August of 2010 and have a deep passion for helping others with Marfan syndrome. My motivation emerged after losing several immediate and extended family members as a result of a lack of knowledge and information. Additionally, I realized we weren't being monitored by doctors who knew how to correctly manage those with Marfan syndrome. Following the tragedies of my family, it became evident that for years our family felt completely isolated and helpless -- something I know so many people with this condition experience. So, in the fall of 2008, I began a mission to research and educate myself with the goal of learning how to proactively manage Marfan syndrome. I connected with the NMF and began community outreach, dedicating myself to creating a support system so that those affected no longer felt alone and isolated, but instead felt empowered. I am determined to educate people on their condition so that they are better able to make well-informed decisions. I feel it is so very important that those affected have somewhere to turn for correct information and guidance with their medical management while also having the opportunity to connect with others who understand and can empathize with their situation. The NMF Houston Network Group is providing such support. For more information about connecting with our group, please email me, Leah Goodman, at nmf.houston@gmail.com.
About me: I have Marfan syndrome and I'm part of the fourth generation in my family. I'm 30-something, married, and we're currently in the process of adopting. Volunteering for the NMF is my full-time "job" until the kiddos arrive. We have 3 animals, 2 cats (Merriam and Oliver) and a dog (Millicent "Millie"). In my spare time I'm a decorator, organizer, baker, gardener, and a loving Marfriend to so many.
Ashley Pinion
NMF Houston Network Group, Co-chair
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 had the surgery to remove the stainless steel bar on April 17, 2012. I believe my aortic 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 important at any age, as it opens the opportunity to learn how to manage your health care and cope with this condition successfully.
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