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.
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 (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.
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).
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.
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.
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. Thae 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.
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.
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.
CARES Foundation launched the redesign of its website, with expanded information and improved navigation.
Funding was provided for four important research studies in CAH. Total CARES funding for CAH reached over $300,000.
As of July, CARES Foundation finally was able to celebrate the fact that every baby in America is now being tested for CAH at birth! Having achieved this goal, CARES began focusing its efforts on international newborn screening campaigns as well as emergency medical response for adrenal insufficiencies in the United States.
Kelly Leight, founder of CARES Foundation, stepped down as Executive Director and President of the Board of Trustees. Kelly continues her work with CARES as a board member at large.
CARES support group leaders across the US received training manuals and interactive training sessions to further improve local support for families with CAH.
CARES created a CAH school/camp information packet to assist families in building a strong team of family, healthcare providers, teachers and others to ensure the health and safety of their child with CAH while at school or camp.
CARES added a 4th newsletter each year and made it available through easy download.
CARES Foundation held its first Continuing Medical Education (CME) seminar during Endo 2009 attended by 68 medical professionals from 15 countries.
CARES joined discussions across the nation emphasizing the importance of newborn screening dried blood spots to communities such as the CAH population for the development of better neonatal testing.
Total CARES funding for CAH reached over $350,000.
CARES Foundation led successful campaigns for adrenal insufficiency emergency medical response in New York, Nevada, Massachusetts and Tennessee. Initiatives began in a number of other states bringing together families, medical professionals and nation advocacy partners. Two CARES family representatives presented our appeal at the Emergency Medical Services for Children (EMSC) national conference in Washington, D.C. in June.
Dina M. Matos was named CARES Foundation Executive Director.
Gregory Kraff became CARES Foundation’s second President of the Board of Trustees.
CARES website was expanded to include up-to-date information on our EMS campaign as well as frequently asked questions (FAQs) about CAH in Hebrew.
CARES support groups grew to a total of 40 in the United States and around the world with 22 new leaders receiving training manuals and interactive training sessions to further improve local support for families with CAH.
CARES produced 4 newsletters; easily downloaded through our website.
CARES Foundation hosted a meeting of the world’s leading clinicians in CAH as well as individuals and families affected by this condition to derive guidelines for the establishment of, and standards for the recognition and maintenance of, Comprehensive Care Centers (CCC) for the treatment of CAH throughout the life cycle September 21-22, 2009 in Bethesda, Maryland. The resulting paper will be presented at the Endocrine Society Meeting in June, 2010.
Over 260 new families from 20 countries and 43 US states joined CARES Foundation in 2009.
On March 18, 2009, CARES hosted a gala in New York City with over 100 attendees, raising CAH awareness in the community and bringing in much needed funds for CAH education, support and research.
CARES support group leaders partnered with leading institutions to host a CAH regional conference in NYC at Weill Cornell Medical College and a family day at Children’s Hospital, Los Angeles which brought families, patients and health care providers together to discuss the latest advances in treatments and care and to share their personal experiences.
A new CARES informational video was created to highlight our Emergency Medical Services (EMS) Campaign and our Comprehensive Care Centers initiative.
Karen Su, MD joined the organization as CARES’ first Medical Director. In this role, Dr. Su provides expert advice directly to our families and patients about treatments, care and daily living through our new “Ask the Expert” service.
A meeting of the Comprehensive Care Centers pilot committee was held in New Jersey to define minimal components and personnel, identify barriers to implementation, and develop and application. Six institutions submitted letters of intent and will be invited to submit applications for CAH CCC designation.
In October, “Guidelines for the Development of Comprehensive Care Centers for Congenital Adrenal Hyperplasia: Guidance from the CARES Foundation Initiative” was published in the International Journal of Pediatric Endocrinology. The paper was presented by Richard Auchus, MD, at the Endocrine Society Meeting in June, 2010.
Progress continued in the campaigns for adrenal insufficiency emergency medical response. Protocols were implemented in Massachusetts, 3 regions in New York State and one county in Texas.Administration of patient carried medications is now available in California, Maryland, Southern Nevada and one county in Texas.
CARES began offering emergency shot kit bags to help patients be prepared in case of adrenal crises.
A blog was added to our website to build community by allowing patients and families to share their experiences, challenges and discuss important topics.
CARES added new support for our Spanish speaking families and patients with enhancements to our website and new Spanish-speaking support group leaders.
With the advocacy of CARES Foundation families, British Columbia, Canada expanded its newborn screening panel to a total of 22 disorders, including testing for CAH.
189 new families from 16 countries and 41 states across the United States joined CARES in 2010. CARES Foundation’s membership reached over 2,600 families internationally.
2010 marked the 10th anniversary of CARES Foundation and was celebrated on March 18 at CARES’ second annual gala in New York City. Over 120 guests were in attendance, where the event honored founders Kelly and Adam Leight and family, Maria New, MD and PerkinElmer.
Due to tremendous community support, CARES Foundation become one of the 100 winners in the highly competitive Chase Community Giving Campaign and was awarded a $20,000 grant by JPMorgan Chase.
Four new panels of tests for CAH were developed by Quest Diagnostics to make the diagnosis of CAH simpler and faster with a single analysis.
California announced that administration of patient carried medication for adrenal insufficiency is now available.
CARES advocacy for EMS protocols, yielded the following results:
- In New York, Nassau Regional EMS voted to add Solu-Cortef® to the region’s formulary and adopted a new protocol for Adrenal Insufficiency for previously diagnosed patients.
- New Hampshire, North Lake Tahoe, NV, and Vermont say “yes” to EMS protocols.
- Washington, D.C. makes progress with EMS protocols.
- Maine and Tennessee work toward implementing protocols.
- Maryland and Pennsylvania approve administration of patient-carried medications.
On March 3, 2011, CARES hosted the Everyone CARES Gala in Fort Worth, Texas. Honorees included: Bradford L. Therrell, Jr., M.S., Ph. D.,Ph.D. – Visionary Award, Richard Auchus, M.D. – Pioneer Award, and Virtuoso – Corporate Partner Award.
In June of 2011, CARES made EMS & Injection Training videos available on their website.
CARES Foundation introduces Specialized Support Groups that include:
Adults with Classical CAH, Adults with Non-Classical CAH, Children with CAH, Children with Non-Classical CAH, Family Planning, Newborns, Pregnancy & Dexamethasone, En Espanol (Spanish Speaking), Surgery, Teens with Classical CAH, and Teens with Non-Classical CAH.
In August, CARES offers families a free, downloadable, resource – Getting Ready for School/Camp Packet which includes helpful documents, parent tips, sample letters and emergency instructions. A printed packet was also made available for purchase, as well as a version that included a shot kit bag.
The Rocky Mountain Hospital for Children at Presbyterian/St. Luke’s Medical Center in Denver, Colorado, hosted a CAH Education Day in November.
In March 2012, CARES Foundation embarked on its first strategic planning initiative. The year-long project included teams comprised of Board members, medical professionals, patients, parents, as well as other friends of CARES. The group addressed the future needs of the CAH community including specialized medical care through centers of excellence for CAH, medical and patient education, research and tools for better living with CAH, as well as the funds necessary to implement the recommendations. This initiative set the stage for the work over the next three years.
As a first step, a bill was passed to declare June as CAH Awareness Month in NJ.
CARES also introduced our “Ask the Expert!” feature. “Ask the Expert” is a new service that allows our community to ask our Medical Director a question that is not already answered on our site. It’s a way to put patient’s and parent’s minds at ease about concerns. Our Medical Director will correspond with parents or patients directly. Many of the “Ask the Expert” questions and answers will be published on our blog (they can be found under our “Ask the Expert” tag).
Our general services brochure has been revised and translated into Spanish for the first time thanks to a generous grant from the New York-Mid-Atlantic Consortium for Genetics and Newborn Screening Services (NYMAC).The brochure serves as an introduction to CARES and CAH for those newly diagnosed, newborn screening professionals, school nurses and organizations serving the Latino community.
Comprehensive Care Centers for CAH
The first Center of Excellence for CAH is on the horizon. Our Board of Trustees is in the process of selecting the first Comprehensive Care Center (CCC) for CAH. The center of excellence will manage the care of the CAH patient from birth or diagnosis throughout their lifecycle. The initial applicants competing for the opportunity to be the pilot center include Children’s Hospital Los Angeles, New York Presbyterian Weill Cornell Medical Center, Oklahoma University Children’s Physicians and University of Michigan Health Systems. The Comprehensive Care Center project has been a multi-year endeavor that began with the development of guidelines for the centers which involved CAH experts from around the world, as well as patients and parents. The guidelines project was funded with support from NYMAC, HRSA and NBSRC. These guidelines will serve as the foundation for the provision quality care in a medical home setting.
The 4th annual Everyone CARES Gala took place on Thursday, March 1, 2012 at 230 Fifth in New York City. The event honored: Gregory Kraff, immediate past president of CARES Foundation; Deborah Merke, MD, MS, a pediatric endocrinologist and researcher at the National Institutes of Health in Bethesda, MD; and Wilson & Son Jewelers, a luxury jewelry store in Scarsdale and Mt. Kisco, NY who are long-time supporters of CARES.
CARES celebrated the first CAH Awareness Month in June 2013. During the celebration we saw an increase in the number of individuals visiting our Facebook page and following us on Twitter to read the CAH fact of the day. Our posts reached thousands of people across the globe who are always eager to learn and help educate others about CAH. Thank you to all who helped spread awareness.
CARES held its annual education conference CAH: A Comprehensive Approach to Patient Care (Classic and Non-classic on Saturday, October 19, 2013 at Miami Children’s Hospital in Miami, Florida. The conference covered a range of topics for pediatric and adult patients and featured some of the nation’s top experts in CAH, including Drs. Richard Auchus, Alejandro Diaz, Maria New, Dix Poppas, and Scott Rivkees, among others.
Patients, health professionals, families and friends gathered in New Jersey on September 28th, Oklahoma on October 12th and in Illinois on October 26th for the CAREing Hearts Walks for CAH. The Walks included a Kids Fun Run, Music, Raffle Prizes and other fun activities for all ages. They all proved to be successful in raising awareness of CAH and raising much-needed funds. Proceeds from the walks benefited CARES’ programs, including patient and medical education, research, centers of excellence, EMS protocols for adrenal insufficiency.
In 2013 the first CARES-designated comprehensive care center opened at New York Presbyterian Hospital/Weill Cornell Medical. The official opening of The Comprehensive Center for Congenital Adrenal Hyperplasia took place on April 19, 2013, under the direction of Dr. Maria Vogiatzi, Medical Director and Dr. Dix P. Poppas, Surgical Director. The Center offers a multi-disciplinary team of experts in the diagnosis and management of CAH for pediatric and adult patients. Services include medical treatment and lifelong follow-up care for patients with classical and non-classical CAH from birth to adulthood; surgical consultations and treatment; transition care for adolescents; psychological support; genetic counseling and prenatal testing, and nutritional support. The Center will also be providing educational programs and conducting research.
On Saturday May 4th, CARES held its annual Everyone CARES Gala. The event was held at the Montage Beverly Hills, was highlighted by a spirit of dedication, commitment and generosity. The evening recognized the remarkable contributions of three distinguished honorees: Dr. Mitchell Geffner, a renowned CAH expert and physician at Children’s Hospital Los Angeles; Gretchen Alger Lin, a tireless advocate for the CAH community; and Micato Safaris, an organization dedicated to helping orphaned and vulnerable African children and adults affected by the HIV/AIDS pandemic. It was the most successful Gala thus far.
CARES hosted two regional conferences aimed at educating patients and families – one at the CARES-designated “The Comprehensive Center for Congenital Adrenal Hyperplasia” at New York Presbyterian Weill Medical Center in New York and the other at Miami Children’s Hospital in Florida. We also sponsored a symposium that was attended on Reproductive Health in CAH at the Endocrine Society Meeting in Chicago, attended by nearly 2000 doctors.
CARES also completely overhauled its website. It is now easier to navigate, offering patients easier access to educational materials and other resources such as “Ask the Expert,” CARES shop, and news on support network activities, and other events.
CARES supported Natural History Study of CAH at the NIH Clinical Center. The NIH Clinical Center is the ideal place in which to carry out this study and is one of the few places in the world that facilitates the conduct of long-term studies of rare diseases. To date, recruitment has grown to 355 CAH patients, ages 6 months to 66 years, and 250 parents evaluated as part of this study, Protocol #06CH0011, since 2005.
CARES made available a flash drive containing two videos with instructions on stress dosing and administering the Solu-Cortef® injection. The videos also review the signs, symptoms and treatment of adrenal crisis. The project was led by Louise Fleming and staff at UNC Chapel Hill.
CARES addressed the issue CAH nomenclature. An umbrella term called Disorders of Sex Development was developed in 2006 by a consensus group to classify conditions in which there is an issue during fetal development of the X or Y chromosome, ovaries, testes, or genitalia. The use of this term is being looked at critically by the CAH community (along with other patient advocacy groups) because it is not a complete description of CAH and may be perceived negatively by patients. Through CARES focus group discussions, parents and patients have expressed their concerns about the potential misconceptions that could arise from having CAH linked to this nomenclature. In order to get a better sense of patient and parent perception, CARES Foundation conducted a survey of the CAH community regarding their thoughts on the issue. The majority of respondents disliked the term and did not identify with it. They also felt that the term has a negative effect on the CAH community. Based on these results, CARES has taken the position of not participating in research studies that use this term.
While state-by-state efforts are important for EMS protocols Adrenal Insufficiency, we are also meeting with members of Congress to develop legislation recommending the adoption of national protocols. Updates include:
- Alabama has an adrenal insufficiency protocol. EMS is allowed to administer patient carried medications.
- Montana has adopted patient-carried medication protocols.
- New Jersey passed full protocols. Individuals must visit their local EMS to request emergency vehicles carry Solu-Cortef®.
- Seattle, Washington, now addresses adrenal insufficiency through Individualized Care Plans. Advanced Life Support (ALS) is permitted to administer patient-carried medication with a completed Individualized Care Plan.
The 5th Annual Everyone CARES Gala was held on March 28th in New York City. The honorees were Dr. Karen Su, CARES Medical Director and pediatric endocrinologist at New York-Presbyterian/Weill Cornell Medical Center; Deborah Brown, a dedicated member of CARES Board of Trustees and co-chair of the Community Advancement Committee; and Diurnal Limited, a pharmaceutical company headquartered in the UK currently developing new treatment options for CAH.
CAREing Hearts Walks have been an enormous success. New Jersey had its 3rd Annual CAREing Hearts Walk on September 28th in Ridgewood. California and Virginia entered the mix with their first ever CAREing Hearts Walks held on October 12th in Los Angeles and November 8th in Chesterfield. Hundreds of patients, families, friends and medical professionals came together to share experiences, learn about CAH, and network with each other.
CONTACT
2414 Morris Avenue, Ste 110
Union, NJ 07083
Phone: (908) 364-0272
Toll Free: (866) 227-3737
Fax: (908) 686-2019
contact@caresfoundation.org
