Living on the frontlines

February 29th is International Rare Disease Day, a special day set aside across the world to bring attention to the experiences and issues facing those with rare disorders (affecting 200,000 or fewer people.) As part of this initiative, the National Organization for Rare Disorders is organizing a national online photo gallery of those with rare disorders. To participate, you need only take a photo of yourself (or your child) holding the Rare Disease Day logo (downloadable at the link below). Then, go to the link below and upload your photo. Fill out the form identifying you (or your child) as a person with Hermansky-Pudlak Syndrome or Chediak-Higashi Syndrome. http://rarediseaseday.us/meet-the-community/handprints-across-america-gallery/

Another item from my e-mail I'm passing along for anyone interested..... The agenda is now available! www.nfb.org/tls The National Federation of the Blind understands how important it is for teachers working in a low incidence field, like blindness, to find opportunities to collaborate and network. In an effort to foster learning, interaction, and community, the NFB is hosting the first-ever Teacher Leader Seminar! During this three-day conference, teachers will have the opportunity to learn, grow, and meet other professionals. This conference will include learning sessions and Make and Takes, networking with other teachers and professionals, and best practice and technology discussions. Teachers will have the chance to influence the content of sessions and lead discussions. Participants are strongly encouraged to take advantage of social media before, during, and after this seminar to stay in contact with each other and teachers in the field. The National Federati...

Here's another item I'm passing along to anyone interested. The National Federation of the Blind Announces the 2012 NFB Leadership and Advocacy in Washington, D.C., (LAW) Program Engaging the Voice of America’s Blind Youth April 13-18, 2012 The NFB LAW program provides blind students with a unique opportunity to explore the inner workings of our country’s government, its history, and its culture. In addition to learning about the history of the organized blindness civil rights movement, how resolutions are passed, and how blindness legislation is created, participants will become familiar with advocacy work for blind individuals and available resources for blind students and adults. Highlights of the program include: visits to historical sites in Washington, D.C., meetings with influential government leaders, and presentations by prominent leaders in the National Federation of the Blind. Read more about this chance of a lifetime in the Summer 2011 issue ...

Just passing this along..... 2012 NFB Writing Contest The annual youth and adult writing contests sponsored by the Writers’ Division of the NFB opened up for submissions on January 1st and will close April 1st. Adult contests, poetry, fiction, non-fiction, and stories for youth are open to all entrants eighteen years and over. The Youth Writing Contest, poetry and fiction, are to promote Braille literacy and excellence in creative writing. Entries will be judged on creativity and quality of Braille. The age groups for these authors is divided into grade levels: Elementary, Middle and High School. Prizes for contest winners range up to $100 for adult categories and up to $30 for youth categories. All contest winners will be announced at the Writers’ Division business meeting during the NFB national convention to be held in Dallas, Texas, the first week of July, 2012. In addition, shortly after convention, a list of winners will appear on the Writers...

While I was in Seattle, I was lucky to get together with some friends from the Chediak-Higashi Association. They came to New York last year for the first CHS conference, and they're doing an awesome job of trying to raise money to have another CHS conference. They are awesome! These pics are from our time at the Everett Children's Museum.