It is in coming together that we find the strength to endure the hardships, learn about the wonder of others and create a place to celebrate success.
The PURA Syndrome Foundation
The PURA Syndrome Foundation is a globally focused charitable organisation, registered in the USA as a 501(c)(3) tax-exempt non-profit corporation. The Foundation supports and educates patients and their families, providing a global community. Governed by volunteer international board members, the Foundation provides the global community with a place to belong. For those isolated by rare disease, the Foundation provides access to medical research being completed and educates people about the condition. Foundation, families, clinicians and researchers together as one community. We keep our families informed by organizing a yearly global conference, developing educational materials and sending out quarterly newsletters.
Our biggest annual event is a conference where the families of patients with PURA syndrome can convene, support each other and share resources. Families also hear from medical researchers who are working to understand PURA syndrome. Bringing the families and researchers together at this event, increases understanding and knowledge for research. This in turn, enhances the quality of life for patients and their families.
The PURA Syndrome Foundation supports and educates patients and their families, providing a global community. This community provides a place of belonging to those who may otherwise feel isolated by rare disease, enriches the medical research being completed and educates those outside the community about the condition.
Our mission is to serve, educate and fund research for families coping with the effects of PURA syndrome.
Our values are:
• Respect – everyone is valued
• Community – everyone belongs
• Teamwork – Foundation, families, clinicians and researchers as one
• Continuity – plans for future growth and change
• Responsibility – ethics and governance
As a foundation, we are working with two other organisations in order to advance our mission to ‘solve’ the PURA syndrome puzzle.
1) The PURA Syndrome Global Research Network: a dedicated group of research and clinical doctors sharing information and providing continuing research into the effects of PURA syndrome.
2) Parents of PURA Syndrome: a Facebook community, administered by the parents, exclusive to parents of PURA patients, where they are able to socially connect and share their experiences. This site is kept private to primary care givers only so they can talk more openly and discuss issues that are sensitive or challenging.
The PURA Syndrome Foundation welcomes contact from the community.
The foundation has parent liaisons that assist and support PURA families. To make contact with the Foundation and/or the private parents group, please email our liaison below.
Parent and Family Liason
The PURA Syndrome Foundation liaison can be reached at firstname.lastname@example.org.
Committee members are volunteers drawn from the Board, the PURA Syndrome Global Research Network and the PURA syndrome parent community. When we need people to join a committee we either issue a general invitation or target those who we believe may have a particular interest and skills in the issue and area.
Annual Report - 2017 Report
Board Positions Vacant
The success of the PURA Syndrome Foundation comes with a need to grow our Board of Directors.
We are currently seeking to fulfil the following Board roles
- Vice President of the Board of Directors.
- Secretary of the Board of Directors.
To view the Secretary Job Description please visit this link.
Please consider helping us, so that we may continue to help families.
Can you help?
There are many ways that you can support individuals and families affected by PURA syndrome.
Donate funds to help support research being undertaken
Hold a social event with your friends to donate proceeds to the Foundation
Share our Facebook page on social media
Support the Board of Directors
Have an idea or want to ask a question?
email our Foundation President Amanda
Governance - Board of Directors
Jennifer is an experienced executive, with background in program management and business process reengineering in the manufacturing and healthcare industries. She is currently Vice President, Business Product at Express Scripts, a Cigna company, where she leads a team responsible for pharmacy benefit management and client support technologies. She is passionate about building an culture of inclusion of those with disabilities in our communities and in the workplace, and co-leads the disability inclusion employee resource group at Cigna to champion that effort throughout their US and global operations. Jennifer’s daughter, Ainsley, was diagnosed with PURA Syndrome in 2017 at 13 years old. Ainsley loves riding horses, listening to music and giving hugs to everyone she meets. Since Ainsley’s diagnosis, Jennifer has been so impressed by the active engagement and support of the PURA community, and hopes to further build that community as the parent liaison to the foundation. Jennifer lives in St. Louis, Missouri, USA with husband Jeff, daughter Ainsley and son Alex.
Jon Erickson - IT and policy support
Jon is the Chief Technologist of InsuraMatch, a subsidiary of the Plymouth Rock Group. He has started several companies: Parlerai, a collaboration service for children having special needs; Apliant, a technology service for insurance agents; and OnCorps, an adaptive decision sciences company. Jon was also a venture partner of Fidelity Ventures, the chief network architect of Fidelity Investments and the chief technology officer of COLT's European Internet business. Jon is a board director of AbilityPLUS, offering recreational opportunities for individuals with disabilities. He is also a board director of Friends of Tuckerman Ravine, partnering with the US Forest Service preserving the slopes of Mount Washington. Jon’s daughter Karly was diagnosed with PURA syndrome in 2016. She loves her brother Grant, spending time outdoors and is a student at the Crotched Mountain School. Jon, his wife Kristin, son Grant and daughter Karly reside in the USA.
Damon Fisher - Treasurer
Damon holds a degree in Electronics Technology, having worked at his current employer for 27 years. In this role, he coordinates and manages complex projects in the electric utility industry. Damon is a strong believer in giving back to the community. He is active in his church, where he is an Elder and serves on the Church Session, which governs the operations of the church. In this role, Damon is currently in charge of the Buildings and Grounds operations and budget and helps create the overall church budget. He also supports the non-profits U.R. Our Hope (rare and undiagnosed conditions), as well as T and C Miracle League, where his son Owen plays baseball as a Texas Ranger. Owen was diagnosed with PURA syndrome in 2014, at the age of 12. Damon is passionate about bringing families with rare genetic conditions together, and hopes to meet all the PURA syndrome families in person one day. Damon lives in Texas (USA), with his wife Amy, son Owen and dogs, Ruby and Anna.
Amanda Shanks - President
Amanda is a Licensed Clinical Mental Health Therapist who owns a private practice in Charlotte, NC. Amanda is passionate about the rare disease community, previously serving as the Director of Fundraising for the PURA Syndrome Foundation, founding and leading the Annual World Rare Disease Day Rally of Charlotte and serving as a founding member of the Rare and Undiagnosed Network of Charlotte (RUNCharlotte). She has represented the PURA Syndrome Foundation at various conferences hosted by Global Genes, NORD, and the EveryLife Foundation. In addition to her rare disease advocacy work, she previously worked for and volunteered at the Mecklenburg County Jail and serves as an Elder at her home church, Avondale Presbyterian. Amanda’s daughter, Taylor, was diagnosed with PURA Syndrome in 2018 at the age of 2.5.
Dominic Spadafore - Past President
Dominic is a licensed architect practicing across the country on a variety of projects from zoos and parks to hospitals, college campuses, and libraries. In addition to design and managing architectural projects, he spends a great deal of time and effort in bringing sustainable design and processes to projects, as well as assisting in the operations of his company, Dewberry Architects. Dominic is husband to Christy and father to Fran, Rocco, and Vincenza “Cenza”. Cenza, was diagnosed with PURA syndrome in August, 2016, when she was 3 ½ years old. Dominic is looking forward to contributing to the PURA Syndrome Foundation through strategic initiatives, growth planning, and outreach and support to the parents and care givers of PURA syndrome patients. For over 14 years he has held many positions serving on non-profit boards for his church, as well as the Eastern Oklahoma chapter of the American Institute of Architects. Dominic and his family currently reside in Tulsa (USA).
Todd Vaught - Vice President
Todd is a District Manager for Waste Management, Inc. During his 25-year career, Todd spent ten years managing collection companies that serviced more than 250,000 commercial & residential customers and fifteen years as a recycling coordinator overseeing an operation that processes and markets 150,000 tons per year of recyclable products. While attending Indiana University, pursuing his degree in Biology, Todd met and married Melissa and they have been married for 27 years. They have two children, Taylor 25 and TJ 22. Their oldest Taylor was diagnosed with PURA syndrome in 2015 at age 22. Todd is an active supporter of Bridge of Promises, a non-profit organization that provides classes and activities for adults with special needs and has participated as a team leader for Habitat for Humanity. It’s Todd’s hope to utilize his business skills to help support the PURA Syndrome Foundation in any capacity. Todd and his family currently reside in Seattle, WA.