About Us>>Who We Are>>History

CARES Foundation History

The need for a national organization focused on Congenital Adrenal Hyperplasia (CAH) was obvious to Kelly and Adam Leight in 2000 when their child was diagnosed with non-classical CAH.  Not only did families and individuals need a centralized location for information and networking, but the non-endocrine medical community needed resources and guidance as well.  Across the country, many states did not screen newborns for CAH, resulting in misdiagnoses and delays in obtaining the most appropriate medical care.  The following chronology summarizes highlights of the CARES Foundation’s history:

2001
Through the efforts of the Leights, CARES Foundation became a 501 (c)(3) nonprofit organization with a board of trustees and a scientific and medical advisory board focusing on research, education, and support for families and individuals affected by CAH.  The organization operated from Kelly’s home with volunteer support, and developed its network of families and professionals to support future growth.  The website (www.caresfoundation.org) became a lifeline for families and individuals, although many contacted Kelly directly by phone and e-mail. At the close of 2001, the first newsletter was distributed, which would expand over the years to a 20-page periodical published three times a year.  The first lecture/support group meeting for affected families was held in New York, the first grant from a pharmaceutical company was received, and the first CAH research grant was awarded by CARES Foundation to N.Y. Presbyterian Hospital-Weill Cornell Medical Center.   

CARES Foundation embraced the issue of comprehensive newborn screening, bringing it to the table with other advocates and nonprofits concerned with genetic conditions, such as the March of Dimes.  Although much progress was made, consistent efforts continue to this day to ensure that all 50 states screen newborns for CAH.

2002
The second lecture and support group meeting was held in New York, and local gatherings of affected families were held in four states to share knowledge and experience.  A family workshop in Texas attracted 70 participants. 

CARES Foundation began its program of providing financial aid to families needing to travel for specialized medical care, and this service continues, with demand outpacing available resources.  

A physician listing was created and made available of pediatric and adult endocrinologists, urologists and psychologists with experience in treating CAH patients as a resource for families around the U.S.  This list is maintained and updated daily.

The Scientific and Medical Advisory Board grew to ten members from all over the United States and one from Australia.

CARES Foundation hired its first staff person, Meryl Stone, and continued operations from Kelly Leight’s home.   

CARES Foundation provided input into The_CAH_Consensus_Statement of the Lawson Wilkins Pediatric Endocrine Society and the European Society for Paediatric Endocrinology and made itself known among the medical and research communities by attending conferences and arranging meetings (e.g. the Endocrine Society, the Androgen Excess Society, the Nonclassic Adrenal Hyperplasia Cooperative Group, the National Organization of Rare Diseases, the Genetic Alliance, and the National Institutes of Health). 

2003
CARES Foundation obtained representation on the Newborn Screening Diagnosis and Follow-up Workgroup, Maternal and Child Health Bureau of the federal government. 

A member of CARES Foundation’s Scientific and Medical Advisory Board received the highest award of the Endocrine Society.

An advocacy victory was celebrated with the passage of the Rare Disease Act and the Rare Disease Orphan Product Development Act by Congress, focused on increasing rare disease research.

CARES Foundation sponsored a CAH Family Workshop in Los Angeles with 165 participants, offering continuing education for nurses for the first time.  The annual conference, free to individuals and families, becomes a major commitment of the organization, and rotates from the eastern to the western part of the U.S.

A Family Workshop provided in Baltimore, Maryland, attracted 150 attendees. 

CARES Foundation began creation of a ‘membership database’ to better serve its target populations, distribute the newsletter, mobilize advocacy efforts, communicate important information, track growth, and capture member needs.
 
Advocacy efforts by CARES Foundation and other groups were successful in increasing the National Institutes of Health budget by sixteen percent, which included research into new clinical treatments and gene therapy for persons with CAH. 

Six family support groups facilitated by volunteers were functioning around the country.
 
2004
CARES moved into its first office space in Millburn, New Jersey and staff grew to three. The website was updated, with newsletters archived and a new section on clinical trials.  Small grants were made to six organizations for CAH-related research. 

CARES Foundation became a partner in a Weill Medical College of Cornell University clinical trial examining the natural history of genetic steroid disorders.

The annual Family Conference was held in Summit, New Jersey with 200 attendees.

Family support groups facilitated by volunteers increased to 22. 

2005
Family conference in Indianapolis, Indiana attended by 250 people.

CARES Foundation made its first substantial research grant to the National Institutes of Health to support CAH clinical research.  The intent was to continue this funding for multiple years.

Kelly Leight received the first Pfizer Unsung Hero Award, which included a grant to CARES Foundation for $10,000.

CARES Foundation staffing grew to five people.

Family support groups increased to 39 in the US and seven outside the U.S.

New efforts were dedicated to Hispanic outreach, through Spanish language materials and bi-lingual staff.

2006
Early in the year, CARES Foundation’s offices were gutted by a fire, resulting in considerable loss of records, furniture and equipment.  With the generous support of donors, friends, volunteers, and staff, new offices were located in Union, New Jersey and the organization resumed operations.

CARES Foundation received a $50,000 grant from Peregrine Charities, a family foundation focused on helping under-funded and underserved populations – families afflicted by rare or orphan diseases.   This grant was used to continue the Natural History Protocol of CAH study at the National Institutes of Health Clinical Center, which had enrolled over 150 participants so far.  

The annual conference, held in South Orange, New Jersey, attracted close to 300 participants and offered simultaneous Spanish translation for the first time. A new product, Medical Alert wallet cards, was distributed to all families.  

The number of volunteer led family support groups grew to 56, with 12 more outside the U.S.  

The first membership survey was designed and distributed through the newsletter and website, with over 500 respondents.    

Only three states remained without newborn CAH screening.  Advocacy efforts focused on those three states.

2007   
Membership grew to over to over 2,000 individuals/families and 500 healthcare and public health professionals in all 50 states and 38 countries.  

The number of volunteer led family support groups grew to 59 in the U.S. and 13 more outside the U.S.

As of August 2007, Arkansas became the final state to approve expanded newborn screening including testing for CAH. In Canada Ontario began screening for CAH bringing the count to three and a half provinces – Manitoba, North West Territories, Ontario and the western part of Nunavut – testing for CAH.