What’s Happening Now
What’s Happening Now
FOR THE CALL TO ACTION!
Call the numbers* below during the following times:
FRIDAY, FEBRUARY 24TH between 12-2pm (EST) and TUESDAY, FEBRUARY 28TH between 12-1pm or 4-5pm (EST).
*After receiving feedback from many of our CAH community members, we would like to encourage you to make calls (see instructions) AND email those people involved with making these important decisions.
CARES Foundation supports all patients and their families’ right to make decisions based on what is right for them. Recently, however, these rights have come under attack. The recently aired National Geographic program, “Gender Revolution” by Katie Couric Media, inaccurately and misleadingly characterized CAH, describing girls born with CAH as “not clearly male or female” and criticizing the parental decision for early surgical intervention. In addition, the American Medical Association has recently begun debating a proposal to end parents’ rights to make a decision regarding surgery on their child and require a child’s consent prior to such surgery. Finally, Human Rights Watch is actively fighting parents’ rights to make decisions regarding early surgical intervention comparing it to female genital mutilation, a horrendous practice by religious sects to disfigure and disable external genitalia. These entities have not asked how CAH patients and their families feel about these issues and they need to hear from you. Below are a list of the people most directly involved in each of these entities and their contact information. If you care about your rights as patients and parents and your daughters’ right to have the best medical care for a healthy body, please contact the people below and let them hear your voice.
202-857-7000 Main Number
202-912-6526, Chris Albert – Senior VP of Communications – (you can access via this number) *contact Chris Albert, email@example.com AND Jenn deGuzman,firstname.lastname@example.org at NatGeo Media
202-912-6500, National Geographic Channels (need contact here)
408-349-3300, Yahoo Corporate (owner of Katie Couric Media) *contact Mitch Semel at Katie Couric Media, email@example.com
*You can also email their general mailbox: firstname.lastname@example.org
MAILING ADDRESS: National Geographic Headquarters 1145 17TH St NW, Washington DC 20036
American Medical Association
800-621-8335 “Unified Service Center” *Try emailing: email@example.com
312-464-5000 Main Headquarters in Chicago. You can send emails via their website: https://www.ama-assn.org/eform/submit/contact-us
Patrice Harris, Board Chair; James Madara, CEO; Andrew Gurman, President
MAILING ADDRESS: American Medical Association, AMA Plaza, 330 N Wabash Ave, Ste 39300, Chicago IL 60611-5885
Human Rights Watch
212-290-4700 New York Main Number*
212-216-1835 – Emma Daly, Communications Director (you can access via this number)
212-216-1250 – Minky Worden, Media Director (you can access via this number)
*TO REACH THE PRIMARY RESEARCHER FOR HUMAN RIGHTS WATCH, KYLE KNIGHT, CALL THE NY MAIN NUMBER: 212-290-4700, press “0” for the operator and ask to be connected to him. The Operator will connect you to his assistant’s voicemail. Please leave your message there.
MAILING ADDRESS: Human Rights Watch, 350 Fifth Avenue, 34th Floor | New York, NY 10118-3299
IF YOU CAN’T CALL DURING THESE CALL TIMES, PLEASE CALL ON THESE DAYS AT YOUR CONVENIENCE.
Make plans now to attend our premiere fundraising event of the year – the 9th Annual Everyone CARES Gala!
CLICK HERE for event tickets and sponsorships
CLICK HERE to purchase an e-journal ad and/or underwriting opportunities
On this special night, we will celebrate the accomplishments of our two honorees, Maria Vogiatzi, MD and Katherine Fowler. Each has made abundant contributions to CARES and the CAH community. Because of the dedication and commitment of people like Dr. Vogiatzi and Ms. Fowler, CARES thrives and can continue its mission of improving the lives of those affected by CAH.
This year’s special guest emcee will be News Channel 7 anchor, Diana Williams!
SAVE THE DATES!
Dates are set for our PATIENT EDUCATION CONFERENCE and the 9TH ANNUAL EVERYONE CARES GALA. Please mark your calendars for these important events!
The Patient Education Conference will take place at Children’s Hospital of Philadelphia. This all-day event will take place on Saturday, April 22, 2017 and will include informational, general and break-out sessions on varied CAH topics led by medical professionals who are considered CAH experts.
Our 9th Annual Everyone CARES Gala will be held in New York city on Friday, April 28th. On this special evening, the CARES community will celebrate the accomplishments of our two honorees, Maria Vogiatzi, MD and past CARES Board of Trustees President, Katherine Fowler. This is an event not to be missed!
THERE ARE FOUR CAH AWARENESS WALK DATES SET –
CALIFORNIA – Sunday, October 1
SOUTH NEW JERSEY – Saturday, October 17
OHIO – Saturday, June 3
MARYLAND – Saturday, June 17
If you are interested in supporting these events, please email Dina@caresfoundation.org.
How do you plan to commemorate World Rare Disease Day! How will YOU make people aware?
There is currently a clinical study for adults, “ATR-101 for the Treatment of Classic Congenital Adrenal Hyperplasis (CAH) seeking both male and female adults, aged 18-80. CLICK HERE FOR MORE INFORMATION AND STUDY DETAILS.
Also, a study: “Health-Related Quality of Life of Female Children with Congenital Adrenal Hyperplasia” for females between the ages of 7-18 years old. CLICK HERE FOR MORE INFORMATION AND STUDY DETAILS.
We thank you in advance for your participation!
Fall 2016 CARES CONNECTIONS Newsletter!
Get caught up on the latest CAH reseach, education, and advocacy news. Have a glimpse at what’s happening with CAH around the world. Share in the memories of CARES events from the past year. Be informed about CARES support, programs and upcoming events. Read our latest newsletter by clicking on the link below. Give us your feedback, and let us know if you have any comments or questions. Enjoy!
CARES has partnered with Lauren’s Hope Medical I.D. Jewelry. Click the image on the left, to order today and CARES will receive 5% of your purchase!
In 2001, Lauren’s Hope introduced the very first interchangeable medical ID bracelet, and overnight, people who had grudgingly worn, or even refused to wear, the standard, plain metal medical ID bracelets of the past suddenly had attractive, durable, stylish options they could enjoy wearing and change to suit their mood, outfit, or activity.
Today, more than 400,000 people wear Lauren’s Hope medical IDs every day. The ever-expanding line of medical ID bracelets, necklaces, anklets, charms, bag tags, and more is always on-trend, made to the highest quality, and guaranteed to meet your needs and expectations.
Who Is Lauren?
The original interchangeable medical ID bracelet was made for Lauren, a 13 year old with diabetes who refused to wear medical ID jewelry because, as she said, ‘It’s ugly and draws attention to my illness.’ So they set out to design a medical alert bracelet that Lauren, and the millions of people like her who avoided medical IDs when they really needed them, would actually enjoy wearing.
Comprehensive Care Centers for CAH offer comprehensive, expert and lifelong medical care for patients in four centers across the country. Visit our Care Centers page for more detailed information.
SHOP WITH AmazonSmile and Goodshop, and help to improve the lives of thousands of patients and families affected by CAH?
All you have to do is click on the logos below to register for each site and designate CARES Foundation as your charity of choice!
Make sure to search for CARES on AmazonSmile as “Congenital Adrenal Hyperplasia Research Educ & Support Found, Inc aka CARES Foundation”