Thanks for visiting!
Please take note: lobby day has been postponed and a new date has not yet been established. We will update you when a new date is available.
3/27/2018 Is a lobby day at the NYS capitol in Albany for those who are living with rare disorders.
This is sponsored by NORD and supported by the Albany Medical Center Clinic. We are waiting for more news from NORD to follow. Please mark your calendars and make every attempt to make a show of solidarity for all patients for coverage of care. Big groups get attention. Your representatives need to hear your stories.
Kayt Marra plans on attending but your input is something that is not replaceable!
If you are unable to attend I encourage you to meet with your representatives at their local office.
Unfortunately, I have not heard anything more from the initial contact so if you are interested I have included her email to directly contact her.
MITO HOPE and HELP's awareness video, "THIS IS MITO"
was shown at the
RARE DISEASE FILM FESTIVAL
held October 2nd and 3rd , 2017 in Boston.
The Rare Disease Film Festival was a new two day event showcasing films from around the world which address the challenges of life with a rare disease.
Most (but not all) films were documentaries. Many were less than 20 minutes. The 2017 festival took place in Boston. Boston is one of the cities on the leading edge of genetic research.
Riley is a local 10 year old boy who loves baseball and much more, despite MITO....
"THIS IS MITO"
A film trailer preview of the full length documentary that is in the works!
You can view it by clicking on the link below.
Mr. Jon Dorflinger, founder and CEO of the Saratoga Film Academy, created this film trailer for our MITO Community.
"THIS IS MITO" debuted October 30th at MITO HOPE and HELP's 4th Annual Mitochondrial Disease Symposium.
We are happy to be able to share this powerful and informative film trailer with all of you!
I would like to thank Jon and all of the participants who volunteered to be part of this TREMENDOUS effort!
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 New York. 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 in the surrounding 26 counties! 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.
MITO HOPE and HELP believes this void
can be significantly filled by funding a MITO Liaison Program; consisting of trained MITO healthcare professionals. An NP, RN and physician, would all work under the direction of Dr. Darius Adams. Mito
Hope and Help continues to diligently try to obtain funding for our MITO Liaison Program. We hope to be able to offer these crucial services in the near future.
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 and beyond.
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.
THERE'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 call 518-623-2666. 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 the Branch manager of the Warrensburg location, 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 is only possible if we continue to grow our number of supporters every year. So please, help us continue this ongoing effort to support MITO HOPE and HELP!!!
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!