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.

CONGRATULATIONS, SANDRA!

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