Living on the frontlines

I know it's not quite Halloween, but when you plan events for the Christmas season, you've got to plan early. It's Christmas season in the HPS Network as we plan for the HPS Network Christmas Concert. I'll be posting much more about some of the exciting plans we have for the first time this year. One of them is that we will be auctioning off decorated Christmas trees at the concert. I've been collecting handmade ornaments of all different types. I want to give a shout out to The Yarn Shop and More in downtown Overland Park for helping by collecting ornaments from customers and staff. You all rock! Thank You. If you're an HPSer that would like to tell them thanks, please leave a comment on their facebook page at:  https://www.facebook.com/pages/Yarn-Shop-and-more/146911838655014

We are very excited that Dr. Daniel Kotton is coming to the Science Meeting at the 21st Annual HPS Network Conference. He is very well known in the stem cell field and, we hope, will be able to help with taking stem cells from our blood, and turning them to specific types of HPS lung cells needed for research. To learn more about him, go to:  http://www.hpsnetwork.org/en/news/2013-10-25/dr-kotton-to-attend-hps-scientific-meeting

I was looking something up on the NIH Website today and saw this video. In recent years NIH has been doing a lot more research on the vision of people with albinism in general. Many people with albinism that is not due to HPS or CHS have visited NIH in the past few years.. In past years with early research, many, many in the Hermansky-Pudlak Syndrome community were the first to lend their eyes to research. We were already going to the NIH for HPS research so it was an easy and convenient connection to make. We continue to be seen at the NIH Eye Clinic. I do have some thoughts about this research of a personal nature, but it's a busy day. They'll have to wait.  Here's the video:  http://www.youtube.com/watch?v=uyaj_NnfF3o

I've been trying to order ostomy supplies today. How long can a human be on hold? I think I'm going to find out. I saw this pic on the Net....wish I knew where it came from to give credit where credit is due. It's a great representation of how I think of ostomy supplies - like crapping on money and flushing it (only you don't flush supplies - you throw them away.) 

I think we in the Hermansky-Pudlak Syndrome community understand the gift of life better than most. We wait with anxiety and anticipation with our friends in need of new lungs. We pray that some family out there somewhere will have the heart and the strength to make a gift of their loved ones lungs when they are in such pain and grief themselves.  As HPSers, we can give as well as receive. We have it in our power to give the gift of life and hope to our HPS friends for years to come. For us, the gift might not be as straight forward, but it is as precious all the same. We can give the gift of tissue for research. We can do this in lots of ways. If you have a planned surgery or biopsy, contact the HPS Network and let us know. This way, we can consult with the researchers to determine whether what you’re having removed or sampled could have some value to our research. For example, last year an HPSer having an overy removed let us know. We didn’t think it would be of interest to resea...

Donna Appell, President and Founder of the HPS Network, recently spoke at a patient advocacy conference held by the Global Genes Project. Care givers come in lots of different forms. Sometimes its our family or friends caring for us. Sometimes, if you're an advocate, you find yourself caring for other HPSers or other friends.  This panel addressed the need for caretakers to take care of themselves. It is something that is SO HARD to do!  Here's a link to video from the conference session:  http://vimeo.com/76072471

Today I've been working on plastering this survey link everywhere I can think of. It is very important that we get as many answers as soon as possible. While not perhaps the most scientific of surveys, one of our researchers needs this data for a grant she is trying to get to further our research.  It is not information we track in the patient registry.  Honestly, it is also information we could use to plan future HPS outreach efforts.  It doesn't matter if you live in a place with lots of other HPSers. Most of us don't have that luxury. We do need, however, to get a feeling for where our population is being treated.  The survey honestly takes about 30 seconds. If you are filling it out on behalf of your child with HPS, please fill out one survey for each child with HPS (as if you have two kids with HPS, they would count as two patients at your local hospital.)  Here is the link: https://www.surveymonkey.com/s/BW2R8Z6