About Tony Jackson

Originally from the fine state of GA, I moved to Maine in 2000, and have been working with Jan and Robin to one degree or another for several years. As the resident Tech Monkey for ASI, you'll see me attached to web stuff and technical challenges ASI and those they support may face.

A Tragic Message from the ASI Team

All,

The evening of September 6th, Jan Marshall, the Chair, Scientific Advisory Board and Board Member of Alström Syndrome International passed away quickly to unforeseen health issues.

Jan was truly the heart of ASI, and her loss will be very challenging to overcome. She was our mentor, “Mama”, the point of solace, advice, and support for thousands of people whose lives have been affected by Alström Syndrome.

While we at ASI stand before this challenge and look to the future, we can hear the voice of our champion with her one expression when our organization would face challenge…

Onward!

Jan and Robin Marshall

Jan and Robin Marshall

Call for Photos!

Call for photos! 

If you have photos from the recent conference in Plymouth, MA, now you can share them! Follow the link and instructions below to send your photos to ASI for inclusion in the photo library!

Send Photos to ASI for Uploading

To send your photos to ASI for inclusion in the library, simply go to the link below for an easy to use web for that will allow you to send your photos to us. We will upload the images to Photobucket for you.

Send your photos to ASI: https://www.alstrom.org/2016-asi-conference/photo-upload-form/ 

 

Alström Syndrome International Represented at Precision Medicine Summit

Washington, DC (February 25, 2016) – Alström Syndrome International, a member of the Community Engaged Network for All (CENA), is represented at the Precision Medicine Initiative Summit being hosted by President Obama today! Amidst several other ‘health data flow’ announcements, Sharon Terry, CENA Principal Investigator, will announce that the Patient Powered Research Networks (PPRN) of the National Patient-Centered Clinical Research Network (PCORnet) will prioritize patient access to electronic health record data in order to let it flow into research studies. CENA, of which Alström Syndrome International is a founding member, is a Patient-Powered Research Network, and, as such, is changing the culture of medical research by involving participants, their families, and all stakeholders in all phases of research. Alström Syndrome International is thrilled to be involved in helping people more readily obtain their health information in order to advance research.

CENA is novel in that it is a collaborative effort of 10 disease advocacy organizations, the University of California, San Francisco, the University of California, Davis and Private Access. CENA utilizes the Platform for Engaging Everyone Responsibly (PEER) built by Private Access and Genetic Alliance to enable individuals to share their health information according to their personal data access and privacy preferences. In the case of Alström Syndrome International, this resulted in the creation of ARC (Alström Research Connect and family exchange), an amazing opportunity for patients and families to both contribute to and participate in Alström-specific disease research. https://www.alstrom.org/alstrom-registry/

To create a more robust network, all the PPRNs have pledged to help participants access their health data and to make it available for research. This greatly enhances the quality, sensitivity, and power of the available research data. “I am delighted to see these data flow! The goal for CENA is to empower people to ask for their health data from healthcare providers and receive it in the easiest and most useful way,” said Sharon Terry, who also serves as CEO of PXE International, a fellow rare-disease advocacy group. Terry is also a member of the Precision Medicine Initiative Cohort Program Advisory Panel.

“Patient health data, combined with information from self-reported data and other sources, will be critical in understanding health outcomes for millions of Americans,” Terry added.

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About Alström Syndrome International
Alström Syndrome International (ASI) was founded in 1995 to promote research and support of individuals affected by Alström Syndrome. ASI works on behalf of individuals and their families to improve quality of life through advancing research, educating clinicians and supporting individuals. ASI is the prime force in conducting basic and clinical research and providing financial support for applied translational research, product development, and treatment development for Alström Syndrome. It also serves as the steward for the intellectual property to equitably advance products and services around the world for the individuals and families living with Alström Syndrome. Visit: http://www.alstrom.org

About CENA
CENA is part of PCORnet, the National Patient-Centered Clinical Research Network, an innovative initiative of the Patient-Centered Outcomes Research Institute (PCORI). Genetic Alliance leads this project, which is a collaborative of ten disease advocacy organizations, the University of California San Francisco, the University of California Davis, and Private Access. For more information about CENA please visit:http://www.geneticalliance.org/programs/biotrust/cena

About Platform for Engaging Everyone Responsibly
Platform for Engaging Everyone Responsibly (PEER) is the world’s first participant-controlled, cross-condition health registry. From the ground up, PEER is based on the principle that genuinely engaging individuals in medical research demands giving individuals (or their legally authorized representatives) the power to decide for themselves how, and with whom, they wish to share their health information. For more information:http://peerplatform.org/

Conference Agenda and Schedules now Online!

We have added some new files and pages so that you have early access to all of the activities and the full conference schedule. We also have included links to the websites for all of our activities at this year’s conference.

The schedules are available as both HTML or PDF, so you can print them, or use your mobile device through the conference to access them at any time.

Take some time and review them all!

Today is National White Cane Day!

Let’s take a moment to admire all of the adults and adolescents with Alstrom Syndrome who are experts in white cane and other adaptive skills!  Let’s also take a moment to admire the little ones who are just learning white cane skills!

Emma-white cane dayrylee white cane day

Associazione Sindrome di Alström Italia  (ASSAI)

 ASSAI Officially Organized!

First meeting of ASSAI

Learn more about ASsociazione Sindrome di Alström Italia

FEBRUARY 28, 2014
INTERNATIONAL RARE DISEASE DAY

Show your solidarity!  Raise awareness and support for Alstrom Syndrome!  Today and EVERY DAY!!

ALSTROM SYNDROME CLINICAL STUDY AT NIH
Alstrom Syndrome is now included in a new Ciliopathy Study taking place at the National Institutes of Health in Bethesda Maryland (USA). The testing would take place at the NIH from Monday to Thursday of any given week. On the last day, Friday, you would meet to discuss results with the medical team. The individual with Alstrom and the families will receive a lot of valuable clinical information and feedback from NIH experts in many fields, and testing that might not be available to you locally is offered at no cost to you . You would also get copies of all results and recommendations to take home with you for your physician(s). All expenses for travel and food/ lodging are covered by NIH for the person with Alstrom Syndrome and one parent. If you live outside the USA, travel to NIH can be paid from the point of entry to the US. The NIH Children’s Center is available for lodging and the expenses are covered.

There are limited spots available, and they will probably fill up fast, so if you are interested, please contact me as soon as possible. Appointments available through May 2014.

This is a really important step forward for all stakeholders in Alstrom Syndrome! Let me know, please, if you are interested or if you have questions. jan.marshall@jax.org

Fish on!

It’s that time again!

Our very own Gina Denbow has once again planned out a very exciting opportunity for folks here in Downeast Maine with the 3rd Annual Angling for Alstrom fishing tournament!

Once again, folks will gather at on Grand Falls Flowage in Woodlands, ME for fishing, socializing, swimming, and of course the cardboard boat derby! The date this year is August 3rd, and all details are in the flyer below.

Flyer for the 3rd Annual Angling for Alstrom

It’s finally time!!!

Have Lobstah Fun at the 2013 ASI Conference!

We are extremely excited that the 7th Alstrom Syndrome Family and Medical Conference is starting up on May 9th!, just a few short days away! We are looking forward to seeing old friends, making new ones, and enjoying all the goings on we have planned in America’s Home Town, Plymouth, MA.

If you’re attending the conference, we’d like to offer some quick reminders…

  • Don’t forget your Damlayas! Drop by drop we form a lake!
  • We’re always looking for goodies for the silent auction! This is a great way to help raise funds for ASI, and have a good time to boot! Items local to your area are always fun, as are artwork or hand-crafted items!
  • Take some time to preview the area around this year’s host city at www.visit-plymouth.com!
  • Plan your conference attendance ahead of time by checking out the Full Conference Agenda and Schedule of Activities online!

We’ll see folks next week! Get ready to “Have Lobstah Fun”!!!