• homepage-slideshow-October-2021

THANK YOU TO TXPWA 2022 CONFERENCE SPONSORS:

Saniona

Radius Health

 

2022 CONFERENCE SPEAKERS (Postponed)

TXPWA regrets to inform you that due to the recent surge in COVID-19 cases, the in-person event planned for January 29, 2022 has been postponed. We will hold the conference once it is safe, and hope that you will join us then. TXPWA will reach out to registrants in the coming days.

 

Lisa A. Graziano, MA, LMFT

Ms. Graziano opened the PWSA (USA) Conference and has 20+ years experience working with parents of children and adults with special needs to help improve the whole family's quality of life. Ms. Graziano has a child with a rare medical disorder, so she knows first-hand how raising a loved one with special needs can be extraordinarily rewarding--as well as extraordinarily challenging and stressful.



Harold J.P. van Bosse, MD.

Harold J.P. van Bosse, M.D. has been practicing pediatric orthopaedic surgery exclusively since 1995. Much of his efforts have been treating the very young child with PWS and spine deformities. For these children, treatment devoted to the least invasive modalities that will preserve spinal growth and chest development. These include bracing, spinal casting and expandable implants, to avoid a spinal fusion during childhood. Dr. van Bosse is a member of the Clinical and Scientific Advisory Board of IPWSO, the Clinical Advisory Board of PWSA-USA, and has enjoyed giving talks on the orthopaedics of PWS at PWSA-USA, FPWR, PWANY and PWCF meetings over the years.



Michele K. Goldberg, Attorney at Law

Ms. Goldberg will discuss government benefits including Medical Waiver Programs, SSI, Medicaid and more! Michele K. Goldberg is an attorney who specializes in Probate Law, with a focus on long term special needs planning, including guardianships, powers of attorney, special needs trusts, special needs estate planning, and obtaining government benefits. Her office is in Bellaire, TX; she works in Harris, Fort Bend, Galveston, Brazoria, and Montgomery Counties and is a regular contributor and presenter at various disability conferences.



Dr. John W. Cassidy. Founder, Chief Executive Officer, Chief Medical Officer

Dr. Cassidy will discuss Interdisciplinary management of outlier patients with PWS and more!

Dr. John W. Cassidy is certified by the American Board of Psychiatry and Neurology and has over 30 years of experience in clinical neuroscience and neurobehavioral rehabilitation programs. Devoting his career to improving the understanding and treatment of individuals with acquired and traumatic brain injuries, Dr. Cassidy continues to help patients return to productive and meaningful lives through a neurospecialty continuum of care. Dr. Cassidy received his Bachelor of the Arts from Hiram College and Doctor of Medicine from the University of Cincinnati College of Medicine. In addition, he received his post-graduate training at Harvard Medical School. Dr. Cassidy has spoken nationally and internationally about the sequela and management of severe traumatic brain injury and authored three books and a number of papers, bookchapters, and editorials. In 2018, he was presented with the inaugural Health Care Hero Award by Houston Business Journal.

Josh Berger, Licensed Professional Counselor

Mr. Berger will discuss marital and sibling relationships when a family member has special needs.

Josh Berger, Licensed Professional Counselor Josh Berger is the Executive Director at Alethia Counseling Center.



Ann Scheimann, MD, MBA

Dr. Scheimann will share a Comprehensive Review of Digestive Issues in Prader-Willi Syndrome.

Ann Scheimann, M.D., M.B.A
Associate Professor of Pediatrics, Division of Pediatric. Gastroenterology and Nutrition, Johns Hopkins Hospital

Dr. Scheimann received her doctorate of medicine at the University of Cincinnati School of Medicine and completed her pediatric residency and pediatric gastroenterology and nutrition fellowship at Baylor College of Medicine/Texas Children's Hospital. She was full time faculty within the Division of Pediatric Gastroenterology and Nutrition at Baylor College of Medicine until 2000 when she moved to join the full-time faculty within the Department of Pediatrics/Division of Pediatric Gastroenterology at Johns Hopkins School of Medicine but remained adjunct faculty at Baylor College of Medicine directing the Prader-Willi Syndrome Clinic at Texas Children's Hospital. Dr. Scheimann completed a Masters in Health Sciences Management at Johns Hopkins School of Business in 2005. Dr. Scheimann's focus of research interest has been in nutrition and obesity with special areas of interest in Prader- Willi Syndrome and nonalcoholic fatty liver disease. She has authored or co-authored to date approximately 90 peer-reviewed publications in addition to book chapters, and meeting presentations.



 

Welcome to Texas Prader-Willi Association

The Texas Prader-Willi Association (TXPWA) was founded in 2009. Small parent groups from around Texas got together to form an association to address the myriad needs of families coping with a child with Prader -Willi Syndrome (PWS). The original board members were successful in obtaining a 501c3 non-profit charitable organization status. This monumental accomplishment enabled us to achieve much of our mission. TXPWA is funded by the events we host, charitable donations and membership dues. We welcome you to join us.

Mission

Our mission is to enhance the quality of life for all those affected by Prader-Willi Syndrome through education, support and advocacy.

Vision

A full, safe and productive life for all affected by Prader-Willi Syndrome (PWS).

  • Provide education, insight and spread awareness to all that are impacted by Prader -Willi Syndrome by addressing the needs through available resources.
  • Advocating best practice standards of care for those who are living with Prader-Willi Syndrome.
  • To inspire and encourage research into this unique and multifarious syndrome.
  • To develop satellite support groups throughout the state of Texas.
  • Provide an annual Prader-Willi specific camp for ages 8 and older.

How Can You Help Us?

We are better together, so team with us to help spread awareness and reach our goals for our Prader-Willi Syndrome communities. We need your experiences and partnership.

Get Involved

We are sensitive of everyone’s time. We understand that life happens to all of us, and our time can be very limited. Please share your time, treasure or talent by joining one of our committees. We respectfully ask of you to stay connected to the committee in some fashion to provide your thoughts, expertise and ideas. If you are interested in joining our family, please send an email to executivedirector@txpwa.org

TXPWA Committees

  • Fundraising 
  • Camp
  • Advocacy
  • Website
  • Residential
  • Support Groups


safety firstNEW FACEBOOK PAGE!

TXPWA has a new Facebook page. Please "Like" us and Follow. Click here to follow us and like our page to get the latests updates.


 

Stay Up To Date, Sign Up for Our Newsletters

 

 

“Remember, You are your Child’s Best Advocate!”