Patrice resides in North Carolina. After many non-diagnoses and misdiagnoses, Patrice was diagnosed in 1993 with syringomyelia soon after the birth of her third child and then later diagnosed with Chiari malformation.
“I felt as if everyone was starting to think I was crazy. I was told it was postpartum depression, I needed to go on vacation and lose the baby weight .” Getting diagnosed made me so happy because I thought maybe now people would understand” said Patrice. It was hard when people would say you look good, but no one ever knew how I felt. “A doctor told me it’s the look-good disease.”
Finally, Patrice asked the question, “How do I get better?” The answer was not a simple one. “I was terrified. I had a newborn and 2 young children. I had so many mixed emotions . I wanted a quick fix. It was during this time she discovered ASAP. They were wealth of information, and committed to supporting those affected by Syringomyelia, Chiari malformation and related disorders.” ASAP helped Patrice by providing specialists names and giving her the support that was needed. Decompression surgery was scheduled and performed in September of 1994 She had to raise her family and show her children that were diagnosed with CM and Ehlers-Danlos Syndrome (EDS), that you can live a fulfilling life. “I am happy to say that my children are all grown adults and have successful careers and happy lives. “
Wanting to give back to ASAP, Patrice started answering support calls. Her involvement progressed to coordinating auctions at the annual conferences and starting a New Jersey support group. Elected to the Board of Directors in 2004, she has worked on a variety of committees, including Personnel and Revenue Generation. Patrice continues her work on the Revenue Generation Committee and is involved in grassroots fundraisers and event planning. Patrice also serves on the Conference Committee and is active in developing support groups. Patrice was elected President to the BOD where she served two terms . She then stayed on as immediate past president for over a year and has now taken on her role as Executive Director.
Patrice knows that fundraisers are an important tool for research. Fundraisers are also an excellent sources of awareness. Her experience goes back more than 20 years where she began her fundraising journey. Always one to take on a challenge. Patrice brought fundraising to a new level in the different schools her children attended where she served as PTA President. She is always looking for the opportunity to get the word out about CM and SM.
In addition to her dedicated service to ASAP, Patrice enjoys spending time with her family, photography, reading, exercising and travel. “I look at the glass as half full. I am grateful for where I am today and I hope to help others in their journey. Positivity is key! Her goal is to make CM and SM a household name and help find a cure for future generations. She feels great strides have been made since her diagnosis in 1993, but there is so much more to do. “Today we are breaking new ground and spreading awareness in new ways”, says Patrice, “I look forward to a bright future in our efforts to help our community.”
Operations Director & Newsletter Editor
Patricia Maxwell first met ASAP’s co-founder, Barbara White, in the summer of 1990. At that time Barbara and Don ran ASAP out of their home. Patricia remembers, “During my visits with Barbara, we would talk about the disorder, her history and the organization. I quickly became emotionally involved to those fighting these disorders and in the spring of 1991, I began a relationship with ASAP that has only grown stronger over the years.”
“I have watched the organization mature with dedicated volunteers who have helped ASAP ‘reach the next level’ several times. The knowledge and awareness of syringomyelia and Chiari have made great strides. This would not have been possible without the dedication of its members and Boards. One person can make a difference but through the combined effort of a group, the world can be changed.”
Patricia lives in Longview, Texas. She has three children and twelve grandchildren. She enjoy spending time with her family.
Jamie has been an ASAP employee since 1997. She resides in Longview, TX with her husband, Larry, three sons, Andrew, Levi, and Garrett, and daughter, Bryleigh.
“I first got involved with ASAP while I was in high school. I volunteered, helping Patricia with much needed filing, numerous information packages and distributing the newsletter to the rapidly growing membership. After several years of volunteering, I was hired part-time and eventually I was hired on full-time. I am not just an employee of ASAP but am part of the ASAP family. To know that I can give comfort to a mother, wife or grandparent gives me great joy.
Personally knowing ASAPs co-founder Barbara White and knowing her dream for ASAP, I feel privileged to be a part of the work that will one day lead to a cure. Its with that knowledge that I am able to give hope and comfort to newly diagnosed people. Throughout the years I have met wonderful and successful people who have overcome the adversity of the disorders to benefit themselves and their family. Without our dedicated members, ASAP would not be what it is today. Not just an organization but a family.”
Jamie enjoys spending time with her family and friends, watching professional sporting events, shopping, making craft projects and watching her sons sporting events.