CARES Foundation has been busy these last few months in its quest to service the concerns of the CAH community. This past March, leading international experts in CAH met to draw up guidelines to improve medical care for CAH patients. I wrote an extensive memo to the chairs of the conference outlining the issues that I felt deserved attention. I am pleased to say that most of these issues were addressed. The conference produced a CAH Consensus Statement which will help to provide consistent standards of care for our community and hopefully improve care for all affected by the disease. My summary of the Statement is on page 3.

Encouraging CAH research and advocating for increased federal funding is a major goal of CARES Foundation. We invited several experts who are engaging in CAH related research to summarize their work in our newsletter. The response has been so tremendous that this topic will continue into the next newsletter. It is encouraging to me, as a parent, to know that so much research is ongoing. However, there is much more work to be done. We must strive, as a community, to ensure that CAH receives adequate research funding and to urge the medical profession to continue its focus on CAH.

In April, I went to Houston, Texas for our first CAH Family Workshop and was delighted to meet so many of our families. Drs. Sheila Gunn, Maria New and Sheri Berenbaum spoke to approximately 70 attendees. I am extremely grateful to the doctors who spoke and the staff at Texas Children’s Hospital who sponsored the event. But, most of all, I must thank Sandra Billings-- without her hard work and dedication to this event, it could not have happened. Sandra—you’re the best! Thank you!

In May, I was invited to attend Dr. Maria New’s conference in Tempe, Arizona on the Genetic Basis of Sexual Differentiation Disorders. The conference was very enlightening. I was especially pleased to see that those involved in the medical management of virilized CAH infants are attempting to deal with some of the issues voiced by the adult female CAH population in their clinical practices. While in Arizona, I got to attend the first meeting of the Arizona CAH support group. What a wonderful group of families! They have some fun activities planned including a Family Picnic on October 26^th (see page 1 for details).

We are continuing our fight to ensure that every child born in the US and abroad is screened for CAH at birth. In July, I had the opportunity to meet with the Chief Policy Advisor for the Bill Simon for Governor campaign in California. Since we have had such difficulty in gaining support for CAH newborn screening under the current administration, I was hopeful that this issue would fall on sympathetic ears in the opposition. In fact, the campaign was unfamiliar with the issue and was very grateful to us for bringing it to their attention. They are indeed focused on children’s healthcare in the state, and I am quite hopeful that Bill Simon will quickly address the CAH newborn screening if elected in California.

This summer, some of our Ohio families wrote letters in support of CAH newborn screening. Their efforts have paid off! Ohio’s newborn screening committee will be meeting in October and CAH is the first issue on the agenda. The state purchased the necessary machinery earlier this month and they expect to begin CAH screening sometime in 2003! Thanks Ohio families!

We have another CAH family Workshop planned for March 8^th, 2003 in Baltimore, Maryland sponsored by Johns Hopkins. Please save the date! I hope you enjoy this issue of our newsletter!

Warm Regards,

Kelly