YOU are the heroes who will make this happen!!

Dear Alström Family,
Many thanks for the compliments following our posts about the Precision Medicine Initiative. A few members need to understand that the work is already underway and that ASI has been energetically involved for about a year, so this is real, not a fantasy. More importantly, the actual payoff will begin shortly when you have to dig deep for the benefit of all and complete yet another survey for ASI, this one the all-important Alström Syndrome Registry (ASR) about which we have written several times. In the future we will refer to it as ARC (Alstrom Research Connect & Family Exchange). You, not we, will be the true heroes in this adventure!
It has occurred to us that you could help the effort and help yourselves by starting to collect and to recollect your [or your child(ren)’s] experience with the syndrome. Take some notes as you review. What happened when? How old were you? What medications were prescribed for which problem? What dosages were used? For how long? Did it work? Think about how dual-sensory deficits and different health issues have affected all the different areas of your life – home and family, school, community, work? What solutions helped or hurt?
The survey is very comprehensive, and the most cool, wonderful, and very important thing about it is that you’ll be able to see not only how other unidentified respondents answered the same question but also see percentages relative to all those who have answered that same question. You can come back over time and compare your personal experience again and again as the number of those participating gets bigger and bigger. And, remember that your privacy is rigorously protected!
We all know that Alström Syndrome is rare and that there is a lot of variability and that treating physicians are often working in the dark. Think about going on line and being able to show the doctor right then and there what others with the syndrome have experienced. Also, we’re working on mobile apps and appropriate technology that will be accessible, so think about being able to whip out your phone and say, “Siri, please tell Dr. Knows Little how many Alström patients suffered from glue ear at age 5.” Siri can respond, “out of 832 patients registered, 76% had glue ear at age 5. Would you like more information on this topic?” When we’re done, we’ve been told that 90 % of the entire survey will be computable and viewable, even (wow!) as charts and graphs. What an amazing gift!
Also, don’t be worried that this may be just too difficult for you! There will be demos and you can stop (AND “SAVE”) and pick-up where you left off. We have “Guides” in place already to reassure you, and we are developing a team of “Faciltators” who can help you complete whatever you find challenging, even work through the whole process with you, if needed.
So, please prepare yourself to move quickly once we are well and truly launched. Do not get discouraged by the size of the task, and remember that you will be personally contributing to one of the landmark developments in Alström Land as well as throughout the global community of those who suffer from rare disorders. Get ready and stay tuned! We are very excited!
All the best and thank you in advance to each and all!
Robin Marshall
ASI Executive Director

Alstrom Syndrome International ON THE MOVE!

Barack Obama, President of the United States, has announced a new initiative called the Precision Medicine Initiative. What he was really talking about was making medicine relevant and appropriate for specific individuals with specific clinical needs and specific treatments through the use of cutting edge medical technology. Because of its partnership with Genetic Alliance and other advocacy organizations, Alstrom Syndrome International is a part of this initiative which was introduced in the recent ASI Newsletter. Sharon Terry, leader of the project, CENA –- was present at the White House event for the announcement yesterday, January 30, with dozens of other patients and advocates. In fact, a young woman, a survivor of and advocate for a rare liver cancer, introduced the President. This was a day of recognition for all of you who suffer from Alstrom Syndrome and for all those who suffer from rare conditions. The work will create a large national registry, of which ASI is a part. We have a jumpstart on everyone. The President and NIH are looking to our CENA coalition to lead the way.
Robin and I were actually in Washington to meet with Sharon Terry when we were advised that she would not be available – she was at the White House! We still met with the Genetic Alliance senior staff, and feel incredibly fortunate and thrilled that ASI is part of this project.
We expect our Alstrom Syndrome Registry to be available in March. Let’s all do our part!
After that exciting morning, we also met with several of the expert physicians who were part of the recent NIH Alstrom Syndrome Study at the NIH Clinical Center. We enjoyed knowing that we were walking in the footsteps of those of you who have participated in this study.
You will be happy to know that an amazing amount was learned for all of you that will advance Alstrom Syndrome research well into the future, and the staff remembers each and every one of you and send their best regards. There are aspects of the study that we definitely hope to pursue to add to our understanding of Alstrom Syndrome!

All in all an exciting time for all of us.

Vote for Alstrom Angels to win a $10,000 donation for research!

CitiBank in Lubbock Texas will donate $10,000 to the winning charity.  LET’S MAKE SURE THAT ALSTROM ANGELS IS THAT CHARITY!

Cast your daily vote for Alstrom Angels

Cast your daily vote for Alstrom Angels

Keep those votes coming Alstrom Land!   Alstrom Angels is currently in first place – You can vote once per day for each of your email addresses.

Click here and VOTE AGAIN today:

Palmer competes in OFSSA

Congratulations to Palmer for successfully competing in the Ontario provincial cross country championships (OFSSA), Nov 2014 in Waterloo, Ontario, Canada. Palmer ran in the Para category. A little snow, a lot of mud, and the wonderful atmosphere of kids sports….  Way to go, Palmer!

Congratulations Palmer!

Congratulations Palmer!

ASI’s Sandra Hubbard-LeBlanc receives the Katharine Pearson award ‘shining example’ of caregiver

Sandra Hubbard-LeBlanc, mother of Cheryl,  member of Alström Syndrome International Board, and chair of ASI’s Canadian branch, received the Katharine Pearson Shining Example Award for promoting her daughter’s independence and high quality of life. She was also recognized for the work she does for caregivers in the local Yarmouth area, including co-facilitating caregiver support groups.
“What started with a meeting around a kitchen table in Yarmouth County a couple of decades ago evolved into a worldwide organization and the woman who got the ball rolling has been recognized with a national award from VON Canada.

SandraSandra Hubbard-LeBlanc – who in the 1990s helped launch what is known today as Alström Syndrome International – is this year’s recipient of the Katharine Pearson Caregiver Award.”   ~ Yarmouth Vanguard.  Read more about it here.


2016 – Eighth Alstrom Syndrome International Conference

ASI Conference – Plymouth Massachusetts May 13-16, 2016 

ASI is already well into plans and planning for the 8th International Family Conference that will be held, once again, in Plymouth, Massachusetts May 13-16, 2016 at the Radisson Plymouth Harbor Hotel.  The facility is undergoing some serious renovation, the Mayflower is back on station after her extensive repairs, and there are a great many other activities that we did not explore in 2013. And, of course, we are working hard to integrate all of the suggestions offered following the last Family Conference, so SAVE THE DATES now and also give some thought to fund raising activities to help ASI maintain its programs – Research, Education, and Family Support, all of which culminate in this incredible triennial event.  Check this webpage for announcements and updates!

ASI Awarded PCORI (Patient-Centered Outcomes Research) Contract

Hello Everyone!It’s always nice to be able to send along really good news. Yesterday, the Genetic Alliance and ten rare disorder partners were awarded a large contract by PCORI (Patient-Centered-Outcomes-Research-Institute). Although we often measure progress by the drop, this is a whole bucket, and it’s making a very big splash too! We will be in touch soon on how YOU can contribute to the success of this project. For now, enjoy this gift of recognition and reward for all that we as the Alström Family have achieved over the years.Our very best wishes to each and every one for the Holidays and for the New Year!
Love to all!