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.

###

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!

Alström Syndrome International Represented at Precision Medicine Summit with President Obama

PRESS RELEASE  2-25-16

ALSTRÖM SYNDROME INTERNATIONAL
14 Whitney Farm Road
Mount Desert, ME  04660
Voice: 207.244.7043 • Fax: 207.244.7678
E-mail: info@alstrom.orghttp://www.alstrom.org

Alström Syndrome International
Represented at Precision Medicine Summit with
President Obama

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.

###

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/

 

 

ASI’s INTERNATIONAL SILENT AUCTION

For those of you coming to the ASI Conference in May, and also for those who can not come.. YES, WE WILL HAVE OUR TRADITIONAL INTERNATIONAL SILENT AUCTION!

If you would like to contribute, please bring (or send) an item for the auction from your country or state. It is particularly fun to see and bid on things from all over the world – all while helping ASI.

SILENT AUCTION

NEW FIRSTS FOR ASI IN BALTIMORE!

The first Alstrom Syndrome Multidisciplinary Clinic was held this weekend at Greater Baltimore Medical Center, in Baltimore Maryland. Organized by Dr. Clair Francomano Director of the Harvey Institute of Medical Genetics, the Clinic “kick off” included five adults with Alstrom Syndrome and seven physicians. Now that our first clinic has been a great success, we hope to hold future clinics for young adults and pediatric patients, and ultimately establish an Alstrom Syndrome Center of Excellence!
Concurrently, during the weekend, we held the first meeting of the Stakeholder Steering Committee (SSC) as part of our recent PCORI Award. The SSC consists of 3 adults with Alstrom Syndrome, 3 parents, 3 physicians, and 3 researchers. The purpose of this inaugural meeting was to consider plans for the full engagement of the entire Alstrom Community at the international conference in May in Plymouth Mass. to develop stakeholder-centered priorities for research. brit-alex Callie-Alex DD-callie katie-cassie parents rod-alex-jdm shannon three amigos

ALSTROM SYNDROME INTERNATIONAL HONORED WITH PCORI ENGAGEMENT FUNDING AWARD

Alstrom Syndrome International was recently selected for the highly competitive Eugene Washington PCORI Engagement Funding Award. We will use the opportunity of the ASI Family Conference in May 2016 to begin involving individuals with Alstrom Syndrome, family members, and other stakeholders meaningfully in sharing and discussing what is important to YOU!
The healthcare research process has traditionally included only scientists and other research-related professionals. ASI strongly believes in the importance of the engagement of nontraditional stakeholders— patients, caregivers, clinicians, and other stakeholders. From topic selection through design and conduct of research to dissemination of results—we can influence research to be more patient-centered, open, and useful, and ultimately lead to greater use of research results by patients and the broader healthcare community.
We will begin the process now with the goal of eventually bringing to the ASI Family Conference topics that YOU indicate are important for your life. You will be hearing more about this as the conference draws near, beginning with a short survey about potential topics of discussion. More information about The Eugene Washington PCORI Engagement Funding Award can be found at http://bit.ly/1idIgtt
We have invited a small group of people with Alstrom Syndrome, Parents, Clinicians, and Research Scientists to form a Stakeholders Steering Committee to help guide the process from beginning to end. However, we need EVERYONE’S involvement and opinions! This engagement process will definitely continue after the conference, as we don’t expect that everyone who has some input to give will be there, and we want to give opportunities for all to participate. We also want people to have a chance to think about and digest what we come up with, and to give further input by whatever style best suits them. As you well know, it is normal and natural for the Alström community to always be engaged. It’s just that now we intend it more systematically and with larger goals in mind. Rather than simply imagining what’s important, or having “experts” decide next steps in isolation, we—the SSC with PCOR’s support—are creating an opportunity to break out of this “top-down” decision-making model and foster a shared responsibility for health between everyone who is involved with Alström Syndrome: affected persons, parents, care-givers, clinicians and researchers alike. “
Don’t hold back – this is a great opportunity to shape the direction of Alstrom Research, Education and Support! We are looking forward to getting started!