Executive Director:
What a full summer it has been at CARES Foundation! In June, I attended the 2003 Endocrine Society’s Annual Meeting and the first meeting of the Androgen Excess Society. These meetings were incredible! I am so excited by the formation of the Androgen Excess Society, a professional society for physicians who have a clinical interest in androgen excess disorders. This group will focus research on these disorders and should add significantly to the body of knowledge on them and encourage further research. The Endocrine Society Meeting was amazing! I would guess that over 10,000 people attended. It took over the entire Philadelphia Convention Center for 4 days. I attended all of the lectures related to CAH and PCOS. The tapes from these meetings are available for sale (see pg. 18). Three of our medical advisors were key speakers—Dr. Deborah Merke, Dr. Maria New and Dr. Ricardo Azziz. Dr New also received the prestigious Koch award from the Endocrine Society (see pg. 14). I met many of the physicians that care for the CAH community there. I left so excited by all of the new developments and research that will benefit those affected by CAH. We are fortunate to have such dedicated physicians studying CAH.
I also sat in on the meeting of the Nonclassic Adrenal Hyperplasia Cooperative Group that met in conjunction with the Endocrine Society meeting. This group cooperates on international multi-center studies on nonclassic CAH. This group has been studying the epidemiology, physiology and genetics of NCAH for over 15 years. It was wonderful meeting this dedicated group of physicians and learning how CARES can help further the research on NCAH through this multi-center study. We look forward to cooperating with them on future studies.
In August, I attended the Genetic Alliance Conference in Virginia. It was fascinating to see what other disease support groups are doing for their communities. I came back with so many great ideas! It was an inspirational weekend. One thing that some groups are doing is collecting their own data from their families—blood and tissue banking and collection of epidemiological data, and then offering this data to researchers. This would allow us to help direct the research and ensure that the research is aimed towards improved health outcomes for those affected by CAH. CARES is investigating these programs, and we will keep you informed of our investigation.
CARES also nominated Pfizer, Inc, the manufacturer of Cortef, Solu-Cortef and Deltasone, for a Genetic Alliance award, and Pfizer was chosen. Pfizer received the Art of Industry Partnership Award for its formation of the New Jersey Health Partnership (NJHP). The NJHP is an alliance of New Jersey voluntary health organizations, pharmaceutical industry representatives and other state and local healthcare groups. It was formed to facilitate the exchange of information about issues of mutual concern and interest. The NJHP serves to promote strategies for ensuring accessible, quality, affordable healthcare for all New Jersey residents. I am fortunate enough to serve on its board and to
see the benefit that this organization brings to organizations like CARES Foundation. We were so pleased to help Pfizer, Inc. obtain the recognition it truly deserves for creating and supporting the NJHP.
I just returned from Indianapolis, Indiana where Jennifer and Mark Lynn and Penny Barrett organized the first CARES Indiana Support group meeting, with the help and support of Riley Children’s Hospital. Over 50 parents attended the meeting held at the beautiful facilities at Riley Children’s Hospital. Dr. Richard Rink, a Pediatric Urologist and Dr. Erica Eugster, a Pediatric Endocrinologist gave terrific presentations and answered questions. I met so many of the parents I have only known through email or over the phone. What a phenomenal day! I want to thank The Lynn’s and Barrett’s, Dr. Rink and his staff, Shelly King, R.N. and Trena Brim, and Dr. Erica Eugster and her staff, Nancy Bulcher, for all of their help, and the Indiana Dept. of Health, Newborn Screening Dept. for notifying the IN CAH families about the meeting. If you would like to start a support group in your state, please contact us.
I also participated in a new clinical trial through Yale University in New Haven, CT on carriers of CAH--all of us parents! This trial is looking at how carriers of CAH process certain steroids and the impact that this unusual processing has on our reaction to stress. It was painless--it entails two days of your time (you can schedule when you are available), and they give you a full comprehensive physical. Plus they pay you for your time. So, you benefit research for our community, get a free comprehensive exam and get paid! If anyone is interested in this, I highly recommend it. Plus, it was fascinating learning about how carriers process these bodily chemicals differently from non-carriers. Email the researcher, Dr. Ann Rasmusson for more information at ann.rasmusson@yale.edu or call her assistant, Valinda Fox at 203-932-5711x4123.
We also welcome our new members of the Board of Trustees, Bonnie Stevens, Mark Engman and Dr. Diane Snyder, and the newest member of our Scientific and Medical Advisory Board, Dr. Scott Rivkees of Yale University! These wonderful and energetic additions to our boards will help us to move CARES Foundation forward in its goals.
Don’t forget about the October 18th Conference in Los Angeles! I can’t wait to meet our west coast members! I hope you can come!
Warmly,
Kelly
