Living on the frontlines

The Cleveland Clinic does a great job of offering online Webinars on a variety of health topics. In September they have two that might be of interest to those with Hermansky-Pudlak Syndrome. The first one is on IPF. While this is pulmonary fibrosis of unknown origin, PF is similar across the board. I know if you're interested, you'll find something useful. The other one that caught my eye is on advances in colonoscopy. Everyone starting at 50 needs one, but we HPS'ers sometimes have to get them a lot sooner than that, and sometimes need them more often than the usual person. Neither one of these Webinars is HPS specific, so don't expect the doc to be able to answer your HPS-specific questions. But, general PF and colonoscopy questions should be okay. If you choose to participate, please help us generate awareness of HPS in these communities by introducing yourself as an HPS patient. Best of luck - here's the link to learn more - http://www.clevelandclinic.o...

This is another one of those resources that has come across my desk and I'm passing along in hopes that some readers might find it useful. The National Federation of the Blind held a day-long job seminar at their national convention. By popular demand, it is now available online. Below is the message from the NFB, along with the agenda so you can look it over and decide if there's anything of interest to you. I want to learn more about the Hadley School's program for those wanting to start their own business. As HPS'ers, we often find traditional employment doesn't fit well with our medical needs. Working for yourself is one alternative, although not for everyone. I'll let you know in a future post what I learn. Here's the info: Good news! I'm happy to announce that there was such an outpouring of interest in the 2011 National Employment Seminar recording that Dr. Maurer decided to put it on the NFB website, www.nfb.org. It is now free to...

I have a LOT of blogging to catch up on, but in the meantime, I wanted to start posting some of the photos from the trip to Puerto Rico this year. It was a great trip and I think we accomplished a lot. When you make an outreach trip, there are the "official" stories that make the newsletter etc. and then there are just the funny little things that happen along the way. There was a McDonalds very near our hotel and we ate breakfast there every morning. By the end of the week, they knew us and our orders - all 14 of us! Donna fell in love with the McDonalds oatmeal. Personally, I can't vouch for it. I'm not much of an oatmeal fan. But, everyone said it was especially yummy. So, here's Donna being the spokesperson for McDonald's oatmeal. We also ordered a lot of bottled water!

The Hermansky-Pudlak Syndrome Network is joining with a coalition of patient advocacy groups and groups representing medical researchers to support the creation of the National Center for Advancing Transitional Sciences (NCATS), a new center within the National Institutes of Health (NIH). The purpose of NCATS will be to look for innovative ways to move high-need medical cures through the development pipeline faster. The new center will focus on research to re-engineer the traditional transitional process at the NIH and in the private sector to find ways to make the process more efficient. The goal is to help potential cures reach patients faster. It will not replace transitional research at the NIH or in the private sector. Areas of particular interest will include: target validation, biomarkers, pre-clinical toxicology, clinical trial design and effective adherence.

The Hermansky-Pudlak Syndrome Network joined with other patient advocacy groups at Genetics Day on the Hill to ask Congress to maintain funding for the National Center on Birth Defects and Developmental Disabilities (NCBDDD). Birth defects affect 1 in 33 births in the United States. Additionally, more than 500,000 children are diagnosed with a developmental disability every year. In recent years the NCBDDD, along with all other programs managed by the Centers for Disease Control (CDC) underwent budget cuts. Some key programs that fall under the NCBDDD include newborn screening for hearing loss, programs working to improve developmental outcomes for children, programs to reduce health care access disparities for people with disabilities and ensuring that disability status is incorporated in all CDC surveys, programs and policies.

The Hermansky-Pudlak Syndrome Network joined with other patient advocacy groups at Gene Day on the Hill to ask Congress to maintain funding levels for Title V Maternal and Child Health Block Grants. These federal grants support programs such as infant screening, prenatal and postnatal care for needy moms, child immunization programs, nutrition and dental education as well as programs for kids with special health care needs. Funding for the program has fallen 10 percent during the past seven years. At the same time, because of the soft economy, more mothers and children are seeking the assistance of programs funded by Title V.

This is another item that came in the NFB's Imagineering newsletter. I can't remember where I subscribed to this newsletter, but it's a good one. Perhaps if you dig around on the NFB's Website, you'll find it - www.nfb.org . Blind Law Student Wins Case On July 5, Deanna Jones, a blind student at Vermont Law School, filed a complaint in federal court against the National Conference of Bar Examiners (NCBE) and ACT, Inc., for violation of the Americans with Disabilities Act. Ms. Jones was registered to take the Multistate Professional Responsibility Examination (MPRE), which is part of the requirements for obtaining a law license in Vermont. The complaint was filed because the NCBE and ACT, Inc., refused to make the MPRE accessible to Ms. Jones, who is blind and has a learning disability. On August 2, a judge ruled that Ms. Jones be allowed to take the MPRE on a laptop equipped with screen access software. For more information on this important victory for Ms. Jo...

I'm currently cleaning out my e-mail after being on the road for some time. I have SO MUCH to post and catch up on! I'm posting this just in case anyone knows a teen who might have an interest. Computer Science Academy 2011 Do you know a blind teen who is interested in computer science? The Computer Science Academy 2011 is a perfect opportunity for blind youth to learn more about computer science. This two-day program, to be held October 7-8 at the NFB Jernigan Institute, will serve twenty-five blind students in grades seven to eleven and their parents. Applications are due by the end of August. Download an application and learn more about the program at the ImagineIT page or contact Natalie Shaheen for more information.

It's that time of year again - time to head back to school. One of the best things about going back to school is new school supplies. Consider doing some of your back-to-school shopping at www.igive.com and a portion of your purchase price will go to the Hermansky-Pudlak Syndrome Network.

I usually post the Hundred People Search updates on Friday, but I'm going to post this one today because I have so much going on, I'm afraid I'll forget. We've added one new person so far this week. That puts us at 88 to go on the Hundred People Search! Keep up all the outreach!

The Hermansky-Pudlak Syndrome Network has launched a new Yahoo! group focusing on the interests and needs of the HPS community between the ages of 18 and 30. Those with HPS, their siblings, interested supporters or the children of those with HPS are welcome to join the group. To join, send your request to Heather Kirkwood, hkdawn@yahoo.com . Please put HPS Groups in the subject line so Heather doesn’t mistake your request for spam.

The Hermansky-Pudlak Syndrome Network (HPS Network) is supporting the Pulmonary Fibrosis Research Enhancement Act, re-introduced this Congressional session in the Senate by Senators Chris Coons (D-DE) and Mike Crapo (R-ID). In the U.S. House of Representatives, Rep. Erik Paulsen (R-MN) and Rep. Tammy Baldwin (D-WI) have introduced the bill. (The bill numbers are S.1350 and H.R. 2505) The legislation calls for a national registry of pulmonary fibrosis patients to assist research. As Hermansky-Pudlak Syndrome causes pulmonary fibrosis 100 percent of the time in types 1 and 4, it is the Network’s hope that those with HPS will be included in these efforts. The bill also calls on the National Institutes of Health (NIH) and the Centers for Disease Control (CDC) to intensify and expand efforts to research pulmonary fibrosis. The legislation also calls for the creation of a national pulmonary fibrosis education and awareness plan which would strive to improve public aware...