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MITOCHONDRIAL DISEASE AWARENESS
WEEK 2015: September 20th-26th
Check out MITO HOPE and HELP's facebook page. We will be sharing some of the ways individuals/families are raising awareness this week!
MITO HOPE and HELP is pleased to announce we have secured a filmmaker to produce a documentary on mitochondrial disease to benefit our MITO Community.
Mr. Jon Dorflinger, founder and CEO of the Saratoga Film Academy, has been very busy creating a short video to be shown at MITO HOPE and HELP's upcoming MITO Symposium, October 30th 2015.
In working with our MITO Community, Jon has come to realize there is a great need for a full length documentary on mitochondrial disease, which he has committed to in the future.
I would like to thank Jon and all of the participants who have volunteered to be part of this TREMENDOUS effort!
All of these smiling faces participated in
MITO HOPE and HELP's 4th Annual MITO Family Fun Day at
the Great Escape on Sunday, June 7th 2015.
We want to thank our generous donors who helped make this day possible:
CALL TO ACTION!
New York State MITO Community;
We need YOU, your family members, friends, co-workers and supporters to contact your new York State legislators today!
Please ask them to support proposed MITO legislation:
Bill S3250 in the Senate and A5174 in the Assembly!
Amended proposed MITO Legislation, S3250A:
Every policy which provides coverage for prescription drugs shall include coverage for the cost of such supplements and vitamins, medical foods such as Coenzyme q10, and other medications used to treat the symptoms associated with mitochondrial disease as a physician shall deem necessary to mitigate and/or treat the symptoms of mitochondrial disease diagnosed, through clinical assessment, muscle biopsy, biochemical testing or genetic testing in a covered person.
UMDF has graciously offered to join our local efforts.
By visiting UMDF's link below, you'll find a very simple and quick way of contacting your legislator to enlist their support.
THANK YOU UMDF!
Thank you Senator Betty Little and
Assemblyman John McDonald,
the primary sponsors of
our MITO legislation.
To see more coverage, provided by TWC News, of MITO HOPE and HELP joining forces with Stewarts for their 2014 Holiday Match Campaign,
click on the below link.
MITO HOPE and HELP would like to extend our thanks to Stewarts and all of their customers who donated to the 2014 Holiday Match Program.
MITO HOPE and HELP received a check for $750.00, which will go towards our 2015 MITO Family Fun Day at the Great Escape!
The Genetic Metabolic Center for Education is open!
There is a NEW and REVOLUTIONARY resource available, which will forever change the way metabolic diseases are diagnosed and managed, providing much improved care for all who utilize their services.
will bring you to the Genetic Metabolic Center for Education.
You can also view a video describing GMCE's services by clicking on the link below:
MITO HOPE and HELP is a non profit 501(c) 3 program, sponsored by NYSARC Inc., Warren Washington and Albany Counties Chapter, www.wwaarc.org
As a unified MITO community, we are dedicated to raising much needed awareness of Mitochondrial diseases.
We passionately strive to represent, unite and offer support to hundreds of
individuals and their families living with, or who have lost loved
ones to, mitochondrial diseases throughout Northeastern NY. Most importantly, MITO HOPE and HELP
wants our local MITO community to know that they are not alone! We
care, understand and acknowledge what EVERYONE is dealing with!
HOPE and HELP is also committed to funding local appropriate medical
care and support services for MITO patients of all ages! Individuals
living with Mitochondrial diseases require specialized, coordinated care
administered by trained professionals. The medical community
acknowledges the lack of appropriate medical care and services for these
poorly understood, complex, chronic and incurable diseases. This void
can be significantly filled by funding a nurse practitioner to
work under the direction of Dr. Darius Adams and Dr. Natasha Shur,
geneticists at Albany Medical Center.
Hope and Help has established an endowment fund with Albany Medical
Center specifically for this purpose. Your donations are greatly
appreciated! We must raise $306,000.00 to reach our goal which includes
3 years salary, benefits and vehicle expenses to fund the position.
addition, MITO HOPE and HELP networks with
organizations, institutions and support resources to disseminate
pertinent information to individuals and their families living with
Mitochondrial diseases throughout our Northeastern NY communities.
any of you would like for MITO HOPE and HELP to speak at your church /
house of worship or for any other group please contact me at,
TOGETHER, we can make a difference!
This website is dedicated to everyone suffering with a Mitochondrial disease and their families, as well as those who have lost their lives to these devastating diseases.
Today is a very important day for our ENTIRE MITO COMMUNITY
no matter where you live!
Below is a link to the first ever WORLDWIDE Mitochondrial Disease Patient Registry.
You are encouraged to visit the site and share your information.
It is our MITO Communities best unified effort and chance for improving care, developing new treatments and someday finding a cure for MITO!
In children, mitochondrial disease is more common than cancer and muscular dystrophy, combined.
this few physicians recognize or fully understand mitochondrial
disease! Treatments, appropriate medical care and support services are
HERE'S A WAY YOU CAN SUPPORT MITO HOPE AND HELP WHICH IS TOTALLY FREE AND EASY!
MITO HOPE and HELP has partnered with TD Bank through their Affinity Membership Program. Yearly TD Bank will issue MITO HOPE and HELP a donation based upon the supporters' balances in their TD Bank accounts.
If you're a TD Bank customer please take a few minutes and either call or visit your local TD Bank branch. Simply say, "I'd like to support MITO HOPE and HELP through TD Bank's Affinity Membership Program". Its that easy! There's NO paperwork involved, NO hassles, NO gimmicks, guaranteed! This is so easy and there is no cost, so why not?
Nothing is deducted from the supporters' account and its totally confidential between the supporter and TD Bank. Simply this is the universal means by which TD Bank has chosen to give back to the communities it serves. The easiest way is to call Marcella Towers, VP of the Warrensburg branch, at 518-623-2991.
If you're not already a customer, please consider becoming a TD Bank customer so you too can help support Mito Hope and Help!
Please ask family, friends and co-workers to help support MITO HOPE and HELP as well. TD Bank customers in other states can be enlisted also.
MITO HOPE and HELP was able to obtain the minimum 50 supporters needed, to qualify for this wonderful opportunity and a minimum yearly donation from TD Bank! However, the yearly donation amount is limitless! So please, help us continue this ongoing effort to support MITO HOPE and HELP!!!
VP. Store Manager Warrensburg,
TD Bank, America's Most Convenient Bank,
3852 Main Street,
Telephone - 518-623-2991
We hope to see you again! Check back later for new
updates to our website. There's much more to come!
Mito Hope and Help has a facebook page!