Living on the frontlines

These are a few random pics from our Christmas. As you can tell, they weren't all taken at the same time, and I'll post more later from random events of the holidays. I'm not in an organized mood I guess. Ryan put up the antique train set he got from our dad around the Christmas tree. Trains have a special kind of meaning in our Kirkwood family traditions. When my dad was very young, in about 1950, it had been a hard year for his family. His dad sold his set of tools to buy my dad the train he wanted for Christmas that year. This is the train you see around the tree, I think. Grin. When I was maybe four, my dad built a train platform in our dining room. We used Fisher Price buildings for the buildings, and gave the little people rides in the baggage car. It was such an event that I remember it even now. Dad (mindful of his two visually impaired kids) built a hole in the middle of the platform so that we could stand in the middle and see everything up close. It

This is from NORD - National Organization for Rare Disorders - get involved and tell your story too! Tell Your Story Reading about the experiences of real people helps others understand what it’s like to have a rare disease. If you would like to share your story, submit a few paragraphs or up to 500 words to NORD in the form below. We can’t guarantee it will be published but we will share as many of these stories as possible on our own website or through other media. Please understand that if you share your story, you give NORD the right to publish it on our website or share it with others, including the press, who may contact us seeking stories to illustrate what it’s like to live with a rare disease. These are some suggestions on elements you may want to include in your story: ◦What process did you (or your child) go through in order to receive a diagnosis? ◦What problems/challenges do you (or your child) experience as a result of your condition? ◦How do you

These photos were taken last year at the HPS Network Family Conference in New York in 2010 during Dr. Gahl's session. Come out this year to meet Dr. Gahl, a major HPS researcher, and encourage he and his lab to keep working on HPS. Dr. Gahl will give a summary of what is known about HPS. Photos by Tommy Tillman

Today I recieved the following e-mail as a result of our participation in Rare Disease DAy. It's a quick survey about your experiences using the internet and living with a rare disorder. It took me about 15 minutes to do it. I'm sure they'd appreciate your input! Dear Rare Disease Day Partners, We are writing to ask you to join NORD in a very important project to raise awareness of rare diseases and the challenges encountered by patients and their families. NORD is partnering with the Pew Research Center to conduct an informal study of how people with rare diseases obtain and share information about their diseases and available resources. We are asking you to tell your members about this study and to encourage them to complete the short survey to ensure that as many rare disease organizations as possible are represented in this survey. You are probably familiar with the Pew Internet and American Life Project, which has published several widely

Book your room now! If you plan to attend the 18th Annual HPS Network Family Conference in Uniondale, NY it's time to book your hotel room. There's another large group in the hotel at the same time, so book now to ensure you have a room. The hotel rate is $139.00 plus tax. Tell them you are with the HPS Network to get the rate. The hotel number is: 516-794-3800 or 1-800-832-6255.

Here's another resource I thought some readers might find useful. Hope my braille reading or learning braille friends enjoy! NFB Sharebraille.org Have a Braille reader on your holiday shopping list? Visit www.sharebraille.org to find free Braille books in a variety of genres!

This is another item I'm passing along for anyone interested. NFB Braille Reading Pals Club Registrants for the new year of the NFB Braille Reading Pals Club will receive their packets starting in January. This is a great program that promotes early Braille literacy for blind children ages birth to seven. We continue to accept participants throughout the year, so those interested and eligible to participate in the program should sign up today.

I have posted about these opportunities in the past. Just wanted to post a reminder for anyone interested. 2011 NFB Youth Slam The dates and location for the 2011 NFB Youth Slam have been chosen! In the summer of 2011, the National Federation of the Blind will have its third NFB Youth Slam, a five-day experiential academy for blind high school students (ages 14-18) focusing on science, technology, engineering, and math (STEM) fields. This year’s program will be held at Towson University, July 17-23, 2011. Registration for student attendees is underway. Adult volunteers are also being sought to help facilitate the program. If you are interested in attending the NFB Youth Slam in either capacity, visit www.blindscience.org to complete an online application, call Mary Jo Hartle, Director of Education, at (410) 659-9314, extension 2407, or e-mail youthslam@nfb.org. 2011 NFB Leadership and Advocacy in Washington, D.C. The second NFB Leadership and A

This is just a piece of information I'm passing along for anyone interested. Sounds like fun to me! National Federation of the Blind Partners with Santa to Promote Braille Literacy Once again, Santa has enlisted the help of the elves at the National Federation of the Blind (NFB) Jernigan Institute to get Braille letters out to hundreds of blind boys and girls this Christmas season. Dr. Marc Maurer, President of the National Federation of the Blind, said: “Santa approached the National Federation of the Blind a couple of years ago and asked us to be his helpers. I’m quite fond of the fellow and was delighted that we could assist him in his work. Braille literacy is the key to success and opportunity for the blind, but unfortunately too few blind children are learning it today. This program will not only spread holiday cheer but will also serve an important educational purpose, as blind children will be able to practice reading Braille as they enjoy their letter from merry Sai

As you all know, every year we advocate for NIH funding. The reality is we wouldn't have HPS or CHS research if we hadn't been taken in by the NIH. We just don't have millions of dollars to pay for research at other institutions. NIH plays a very special role in our country in this respect. This is just an update, for those who are interested, in the current NIH funding effort. It comes from the American Thoracic Society. From ATS: The FY2011 omnibus appropriations bill being prepared by Senate Appropriations Committee chairman Sen. Inouye (D-HI), includes a $750 million, or 2.4% funding increase for the NIH in 2011. The omnibus bill comprises all 12 spending bills that have been passed by the Senate Appropriations Committee, including the Labor-Health and Human Services bill which funds NIH. It is not yet clear, however, if Sen. Inouye has the necessary bipartisan support to get the bill passed in the Senate. If the omnibus does not gain passage by the end of next week

 This is the duo that organized the event! Way to go ladies!

Once again, I'm just passing along information I thought some would find useful. The Christian Record Services The Christian Record Services offers scholarships in all areas of study to undergraduate students who are legally blind. For applications or additional information contact: Christian Record Services 4444 South 52nd Street Lincoln, NE 68516 Telephone: 402-488-0981 Web site: http://www.christianrecord.org

This is another item that came across my desk. It's a great opportunity! If you're interested, check it out! The National Federation of the Blind Announces the 2011 NFB Leadership and Advocacy in Washington, D.C., (LAW) Program Engaging the Voice of America's Blind Youth April 8-12, 2011 This four-day experience will provide blind and low-vision students in grades six to nine, or ages twelve to sixteen, with a unique opportunity to explore the inner workings of our country's government, its history, and its culture, while staying at the headquarters for the National Federation of the Blind in Baltimore, Maryland. In addition to learning about grassroots legislation efforts, 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.

Photos from the HPS Network circulated on the TV screen in the private room where the event was held. It was a very nice display!