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Mission

We are an organization that advocates for children and young adults who have syndromes without a name. We offer support, advice and information on the challenges that families face when there is no diagnosis. We also advocate for changes in the medical community that will benefit undiagnosed individuals.

Purpose

We advocate for

  • awareness/recognition by medical community, education system, social services, general public
  • more dialogue within the medical community with respect to undiagnosed cases
  • increased continuity of care among/between specialists and primary care physicians
  • improving the diagnostic process by attempting to participate in/create a database in order to make diagnostic connections
  • potentially new programs to protect children/families without a diagnosis from "falling through the cracks" and to allow them to access appropriate services


We provide support to

  • address the lack of information families have without a diagnosis
  • offer empathy/understanding/connections to other families
  • motivate and empower parents/families to advocate for the best heathcare/services for their child
  • we help to address psychosocial concerns such as feelings of isolation, guilt, helplessness, frustration, emotional distress, etc.

Our Board of Directors


 

Amy Clugston - President
  Andrea Uscinski - Secretary
  Andrea Creech - Treasurer
  Ashley Page
  Michelle Maleski
  Kelly Ann Larson

 

 

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 to 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.