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About US

How We Began
Board of Directors
Information Sheets
Contact Us
 
 
 
 
How We Began

September 2001 - After searching high and low for some kind of support for herself and her daughter, Amy Clugston started a e-mail support group and website for families of children with undiagnosed conditions.

September 2003 - Amy Clugston learned of SWAN which originally started out in the United Kingdom several years before. They had 800 members at the time and were getting interested families internationally. They were looking for people to start branching out into different countries.

December 2004 - We sent out our first newsletter.

July 2006 - Gathered a few people together start the process of becoming a tax exempt organization. This was also our start of regular board meetings.

October 2007 - We received our approval from the IRS for being tax exempt under 501(c)(3). Which goes back to September 2006 when the first paper was filed.

Our Board of Directors


 

Amy Clugston - President / Treasurer

I live in Otsego, Michigan with my husband John and 3 children; Lorna age 11, Jadon age 7 and Cloey age 3. I have been a stay at home mom since Lorna was born, she was born with many issue affecting her growth and development. She has many unique characteristics with no overall diagnosis or an undiagnosed genetic condition. I have volunteered in many aspects of my community. I have been a parent representative for my Local Interagency Coordinating Council for Early On for the past 8 years. It has been 6 years since I became a Girl Scout Leader for my daughters troop. I have volunteered, been on an advisory committee and am currently a Board of Director for Parent to Parent of Southwest Michigan. I have volunteered and held a position on my kids school PTO. For a few years I have been a Den assistant for my sons Cub Scout Den.
 

Picture Soon! Lesley Bennet - Vice President / Secretary
 
I live in Stamford, Connecticut with my husband, John, our 2 children and 2 dogs.  My son, Sean, is currently attending college in Michigan and my daughter Kelly is a special needs child.  Kelly is 18 and has an “undiagnosed” neuromuscular disorder and numerous orthopedic, GI, and allergy related problems.  Due to Kelly’s numerous hospitalizations and doctor’s appointments, I currently work at home as a freelance medical (technical or regulatory) writer and consultant.  After graduating from the University of Michigan with a degree in biochemistry degree, I worked in clinical and research laboratories while pursing a master’s in immunology. I am a trained laboratory professional who keeps current in the fast paced biotechnology world by attending graduate certificate programs in stem cell research, molecular (genetics) diagnostics, and pharmaceutical regulatory affairs. I am a member of the American Medical Writers Association, Regulatory Affairs Professionals, and several medical laboratory associations.  Since one of my passions is helping special needs children and their families,  I work as a school IEP/504Plan mentor and as a volunteer for patient advocacy groups representing patients with GI, food allergy, and UNDIAGNOSED disorders.  
Picture Soon! Ashley Page - Treasurer / Secretary
Picture Soon! Michelle Maleski
Picture Soon! Andrea Uscinski
Heather Long
Picture Soon! Mary Elizabeth Parker, PT, MS,
Duke University 1991
Medical College of Virginia 1995
Texas Woman’s University PhD ABD 2008
 

Since returning to Austin, Texas from Trumbull, Connecticut in 2005 Mary Elizabeth has been teaching at Texas State University-San Marcos in the Department of Physical Therapy. In the fall she became assistant professor in a tenure-track position as she hopes to complete her PhD in physical therapy in May 2008. Currently she is a doctoral candidate at Texas Woman’s University and her dissertation focus is differential diagnosis in pediatrics. This year she passed her clinical specialist exam in pediatric physical therapy and is now nationally certified. 

Mary Elizabeth continues her clinical practice through a local company in Austin, Little Tesoros Therapy Services, LLC. She is again working for/with many therapists that worked for her in her first Austin experience…and she loves it! Without the frustrations of management she can enjoy her patient care. Mary Elizabeth specializes in medically fragile children and children without definitive diagnoses.  

In her leisure time she does respite care for a local adoption agency, Marywood Family Services. It is not unusual to see her on the Hike and Bike/Lady Bird Trail with a stroller in tow. Her colleagues at the university have also gotten used to the sounds of infants in her office, and her students enjoy the one-on-one interaction with the children as they learn neuroscience and pediatric physical therapy. Recently Mary Elizabeth has ‘adopted’ two new rescue puppies as she lost dear Chipper prior to her move from Connecticut. Bella and Hannah Grace now join ‘Grandma’ Anna. 

In addition, Mary Elizabeth is on the Board of Directors at Sammy’s House, a daycare for special needs children that also takes care of typically developing children. Her Chi Omega Alumnae group worked to renovate the new home of Sammy’s House and raised over $10,000 for one room which included renovating the kitchen, refurbishing of the beautiful wood floors, painting, and purchasing of adaptive equipment. Despite Mary Elizabeth’s passion for the project, yet inability to assist meaningfully with many renovating tasks, her alum group is still allowing her to move from president-elect to president in 2008! Don’t ask her to use a sander or remove cabinetry…but she can inspire others with the stories of the children to move mountains! Many family, friends, Austin school groups, the Bikers for Christ, and Sears jumped on board before she was done. Her Chi Omega Sisters were a remarkable source of assistance and support! 

Finally, one of the greatest honors has been Mary Elizabeth’s appointment to the Federation of State Boards of Physical Therapy Examiners where she serves as an item bank reviewer for the physical therapist assistant exam. She has also been invited for additional service to this organization. She enjoys the time in the Washington D.C. area where she has many friends…and loves the fact her family can join her on these extended business trips.

 

 

Information Sheets

Helps get information out about SWAN USA, print off our Flyer or Brochure and give it to parent groups, doctors offices, therapy centers and any other place appropriate.

Contact Us

Phone: 269-692-2090

Family Line: 888-880-SWAN

swanusa@undiagnosed-usa.org