Since our last newsletter, our world has been through some major changes. We hope for rapid peace and stability for Iraq, the Middle East, the United States and the World. However in our homes, no matter what is happening around us, our struggle to better understand and cope with the disease congenital adrenal hyperplasia goes on. At CARES Foundation, Inc., we are tirelessly working for the interests of the CAH community.

On March 8^th, 150 CAH affected individuals, parents, physicians, nurses and state newborn screening officials came to Johns Hopkins University Medical Center in Baltimore, M.D. to attend our recent conference. It was such a wonderful day! The speakers were so impressive and enlightening.

These physicians all presented without compensation and out of their dedication to the CAH community. Dr. Migeon graciously donated the use of the facilities at Johns Hopkins, and he and his colleagues (especially Amy Wisniewski), helped us with all of the arrangements. The Inner Harbor Starbucks donated the excellent coffee and baked goodies for our refreshments. Many pediatric endocrinologists in New Jersey, Maryland, Pennsylvania, the District of Columbia, Virginia, North Carolina and Delaware notified their patients about our conference, and the State Newborn Screening programs from NJ, DE, MD, VA and PA all mailed our invitations to the positive screens in their databases. Finally, many thanks to all of the CARES families who volunteered to plan this event and helped on the day of the conference, we could not have done it with out you! We thank everyone so deeply for their time and effort that made this conference such a success!

Given the seriousness of this shortage and the implications for the health of our children, one of our medical advisors, Dr. Phyllis Speiser, is now giving all of her CAH patients prescriptions for hydrocortisone suppositories. They are much simpler to use than injections, and are rapidly absorbed to therapeutic levels within an hour, longer than the IM Solu-Cortef injection, but with longer lasting effects. Parents will be on their way to ER by the time drastic measures are required, and this is better than giving oral drug which is vomited. Suppositories cannot be used when the child has diarrhea. One manufacturer is Monarch Pharmaceuticals, and the product is called Anusol-HC. It comes in packages of 12 –25 mg suppositories. Higher doses can be compounded at specialized pharmacies. Some physicians may not be that familiar with the use of HC suppositories, although they are used regularly in lieu of IM injections in Europe. Please refer them to the medical journal article: Newrick PG, et al.; Self-Management of Adrenal Insufficiency by Rectal Hydrocortisone, Lancet, 335:212-213 (1/27/90). Please ask your doctors about this alternative/complimentary product and refer them to this article for more information. We must have the tools we need on hand to save our children’s lives if necessary.

Our conferences, support services and informational materials are offered without charge to all CAH affected individuals and families. Please consider making a generous tax-deductible gift to CARES Foundation, Inc. so that we can continue our important work on behalf of the CAH community.