Information, Education, Support and Advocacy for
Families, Children, Teens and Adults Who Are Living With The Challenges of
Congenital Anorectal, Colorectal or Urogenital Disorders


 

Jenn McDaniel

City/State: Bow, New Hampshire
Relation, age of affected child: son, 15
Diagnosis: VACTERL
PTN member over 10 years
Conferences attended: 2012, 2016

Fifteen years ago my son, Zachary, was born with VACTERL. Like many of you, I was stunned and clueless about what this diagnosis would mean for him, but with the help and support of PTN members I gained knowledge, confidence, and reassurance that my son could still have an amazing life. Over the years, Zachary has had multiple surgeries and currently has a Malone. Through all of this, the PTN was there providing support, information, and encouragement. I will be forever grateful for the PTN and I would like to help other families by sharing what I have learned from others, and from our own research and experiences. Even though my son is now mostly independent in his care, I am committed to continuing our education on his condition and trying to further our awareness about new research and potential treatments.

The PTN and its network of parents, caregivers, and doctors has been an invaluable resource for our family. I have been a member of the PTN for over 10 years and we have had the opportunity to attend two PTN Conferences (2012 and 2016), as well as a PTN picnic many years ago in Cincinnati. Each time we have enjoyed meeting new people, making friends, and learning new information. This year Zachary is planning to attend Rally, which he has heard so many wonderful stories about, and is really looking forward to that new adventure.

I believe my skills and experiences would make me a valuable additton to the PTN Board of Directors. Professionally, I have a BA in psychology and experience working with children and those dealing with mental health issues. I have also served as a Family Readiness Advisor for the United States Marine Corps for over seven years, advocating for military families, planning and organizing events, and providing guidance and mentorship to military spouses. As a military family we have moved numerous times all around the country and even to Hawaii. Because of this I have had to research many different hospitals, doctors, and schools to ensure that our son continued receiving
the best possible care. Being a military spouse also makes me uniquely qualified to help other military families, whether it be understanding the burden of frequent moves, dealing with a deployed spouse, or navigating the military healthcare system.

I am eager to work alongside others to increase awareness and ensure parents learn how to advocate for their children to make certain that they are gettng the best  possible care so that they can experience life to its fullest potential. In closing, I am organized, responsible, hard working, and pro‚Äźactive and I would welcome the opportunity to join the PTN Board of Directors.