March 2011 eNews NORD Welcomes Five New Board Members Five noted leaders in the rare disease community have been elected to the NORD Board of Directors. Details. NORD Forming Coalition on Medical Foods Issue At a conference hosted by NORD in Washington DC last month, approximately 80 patient advocates, physicians, genetic metabolic dietitians, and others agreed to form an ongoing coalition to address problems related to accessing the medical foods required for treatment of … [Read more...]
Courtney Leigh Hewitt Scholarship 2010 – Skyler Parker
March 24, 2011 by
Skyler Parker, Winner 2010 Courtney Leigh Hewitt Scholarship 2010 Skyler Parker, as the proud recipient of 2010 Courtney Leigh Hewitt Scholarship, says " I am extremely honored beyond words to receive this award! " Without ever having the pleasure and opportunity of getting to know this amazing, incredible human being. I humbly accept this award and will use it to further my education and become a Nurse, a life long dream of mine! Currently, I am enrolled in the Nursing … [Read more...]
Gerry Batte Russell Taking Action!
December 31, 2010 by
Gerry Batte Russell Taking Action...! "I became "friends" with Todd R. Hewitt on Facebook and after reading brief reviews at A Celebration of Women.org about a book he had written and chatting back and forth with him, I ordered his book "Courtney's Story." I loved all the family photos in the book, because it put faces with the story. "Courtney's Story", really broke my heart! She was a vivacious young single mother of four beautiful children ages 7, 8, 11 and 12.; she … [Read more...]
Courtney’s Story: Special Holiday Offer!
December 26, 2010 by
Courtney's Story: A Compelling True Story My Precious Baby Girl [Paperback] WOMAN of ACTION: Courtney Leigh Hewitt https://851.5b0.myftpupload.com/?p=16540 HOLIDAY OFFER not to be missed! Order NOW! CLICK HERE: Reginald Todd Hewitt … [Read more...]
NORD – December 2010
December 20, 2010 by
NORD e-News: December 2010 Edition Holiday Greetings to All! On behalf of the NORD staff, Board of Directors, and Medical Advisory Committee, we extend our best wishes to all for happy holidays and a wonderful New Year! NORD is blessed with a strong and supportive circle of members and friends. We look forward to working with all of you to make 2011 the best year ever for the patients and families who rely on us to promote awareness, innovative research, medical advances, and fair … [Read more...]
NORD September 2010 – The Courtney Project Supports
September 28, 2010 by
September 2010 eNews House Passes Improving Access to Clinical Trials Act In a victory for rare disease patients and families, the U.S. House of Representatives on Sept. 23 passed the Improving Access to Clinical Trials Act (I-ACT). The legislation, which had been passed a few weeks earlier by the Senate, now goes to the White House where President Obama is expected to sign it. “This legislation will support the development of new therapies by removing a barrier that … [Read more...]
Team Courtney Taking Action! – AIDS WALK, October 2, 2010
September 27, 2010 by
Team Courtney is Taking Action! October 2, 2010 This coming Saturday, October 2, 2010.....there is an,"Aids Walk", in Washington, D.C. for Aids Awareness and there is a team called,"Team Courtney", that will be representing not only my daughter Courtney, but countless other women, men and children who are living with or have lost their lives to PML and HIV/AIDS. The team members will be carrying posters and wearing Tee Shirts with Courtney's picture on the front and … [Read more...]
