Executive Director:
Dear Friends,
Happy 2005! I send best wishes to all of our members for a happy and healthy New Year. The new year has brought some changes to CARES, including the departure of Laurie Hitzig and the addition of Renata Blumberg and Debbie Jackman. Laurie is missed by us all, and we thank her for all of her hard work and dedication to CARES. Renata is our new administrative/programs associate, and Debbie is assisting Meryl with the bookkeeping. We are delighted to have them both working with us.
October 2004 Conference
Our last conference was an amazing success. We had over 200 people attend from 23 states and 4 countries. We owe so much thanks to our terrific speakers, Dr. Maria New, Dr. Phyllis Speiser, Dr. Deborah Merke, Dr. Sheri Berenbaum, Dr. Susan Baker, Dr. David Sandberg, Dr. Dix Poppas, Amy Sturge, Meg Keil, Janet Green, and the fabulous panel of adults with CAH for sharing their knowledge and experience with us all. We also owe a debt of gratitude to our master of ceremonies, Dr. Luigi Garibaldi, and to Overlook Hospital, Atlantic Health Systems for hosting our conference. They were so gracious and went out of their way to help us make the conference a success. Finally, I want to thank our conference planner, Robin Levan, who once again did a magnificent job, our superb staff, Meryl Stone, Pam Knight, and Laurie Hitzig, as well as all of the volunteers who showed up to help out on the day of the conference. I also want to thank our corporate sponsors, Pfizer, Inc., and Quest Diagnostics, Inc. for their support, along with Starbucks for once again keeping us fully caffeinated with their delicious brew. Starbucks donated the coffee and Panera Bread donated the cookies for the coffee break. We could not have had such a successful conference without you all!! Our next conference will be in Indianapolis on November 12, 2005. Details will follow.
Los Angeles Every1CARES Awareness and Fundraising Luncheon
Our first Every1CARES Luncheon will take place on March 10, 2005 from 10:30am-2pm at the Skirball Cultural Center in Los Angeles. Our wonderful event committee and its energetic and passionate chair, Jami Abell Patterson, have been hard at work to ensure that this event is spectacular and raises significant sums for CAH research. We are honoring Senator Dede Alpert for her dedication to children and her sponsorship and support of legislation to expand California’s newborn screening program to include CAH and many other life-threatening disorders. In August of this year, Governor Schwarzenegger signed this mandate into law and California should begin its expanded screening for CAH in July, 2005. Our luncheon will begin with a boutique and silent auction at 10:30am, followed by an elegant lunch, a few eye-opening and heart-tugging remarks about CAH, the premiere of our CARES video (click here for details), and our special award presentation to Senator Alpert.
We still need sponsors for the event and donations for our auction. Please check our web site for sponsor and donation forms. We appreciate donations of airlines tickets or miles, vacation homes/packages, dinner at restaurants, fine wines, tickets to shows and sporting events, memorabilia, priceless items like backstage tours or guest appearances, lunch with a celebrity, autographed items, golf games, professional services, beauty or spa services, decorative items for the home, fashion items, electronics (we hope someone will donate an iPod), etc.
We also would love for all of you in the Southern California area to attend if you can, and bring your friends. It will be a fun way for you to show support for CARES and help raise money for CAH research and our programs.
Newborn Screening Update
It is time for us to direct our efforts to the remaining states that do not screen for CAH and other life-threatening disorders. California and Oklahoma, thanks to the efforts and advocacy of CARES members, have approved and funded expanded newborn screening to include CAH and expect to begin screening for these disorders soon. Nebraska is working on adding CAH to its panel and hopes to implement it in 2005. Washington, DC, New Hampshire and Utah are still working on getting expansion approved and funded. Kentucky has approved the addition of CAH, but has not appropriated the funding to implement it. West Virginia, Louisiana, Kansas, Arkansas, and South Dakota do not screen for CAH and are not actively moving towards this in the near future. Montana offers CAH screening as an option for an additional fee, but it should be mandated. Members in many of many of these states are already working on media exposure for the issue, talking to their legislators, participating on state genetics committees, etc., to move things forward. If you can help, please call the office or send email.
We have a lot to look forward to this year as a community and as an organization. Thank you all for all of your help and support during this past year. CARES continues to grow and make more of an impact through the involvement and participation of our members. You are the best!
Warmly,
Kelly
Dr. Maria New from Mt. Sinai (above) was a featured speaker at our New Jersey conference.
Chelsea (above) , who turned 9 on the day of the conference, blows out the candles on her birthday cake as Josh Leight (with guitar), Adam Leight (center), and other conference-goers look on.
The main lecture hall at Overlook Hospital was filled to capacity as we hosted over 200 CARES family members and professionals.
