MITO HOPE and HELP - Reaching out to individuals living with Mitochondrial Diseases


Thanks for visiting!























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.



3/2015


 
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!

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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!

MITO 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.
 
Mito 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.

In 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.
 
If 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, founder@mitohopeandhelp.com.
 
 
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.

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2/23/2015
OUR MITO COMMUNITY IS THANKFUL TO SENATOR BETTY LITTLE,  ASSEMBLYMAN JOHN MCDONALD  and all of our local legislators who are sponsoring and / or supporting the newly proposed MITO bills in NY State:
Senate bill #3250 / Assembly bill 35174

Checking in with state Sen. Elizabeth Little 
CONSTITUENT SERVICE IS PART OF LAWMAKER'S DAY-TO-DAY JOB

State Sen. Elizabeth Little, R-Queensbury, talks to The Post-Star editorial board in Glens Falls on Thursday

19 hours ago  •  By Maury Thompson(0) Comments

GLENS FALLS -- Catherine LaFond-Evans of Warrensburg, a mother of two children diagnosed with mitochondrial disease, one of whom died in early adulthood, contacted state Sen. Elizabeth Little, R-Queensbury, about the cost of treatment.“I didn’t really know a lot about it before this,” said Little.The genetic disease causes cells to malfunction and not convert food into energy.“It’s very difficult to diagnose. And what is required is that the physician makes a formula of all of these vitamins and supplements,” Little said. “It’s prescription, but the insurance companies won’t cover it.”Little had a staff member and a legal adviser to the state Senate attend a symposium to learn about the disease and issues related to it.Then the senator introduced legislation, S3250, to require insurance prescription plans to cover vitamin and supplement solutions, known as “mito-cocktails,” when prescribed by a physician as “deemed necessary to mitigate the symptoms of mitochondrial disease.”Little said the legislation is an example of how she attempts to focus on addressing the frustrations of constituents, organizations and local governments.“I don’t jump at things. I try to do things that have a real benefit,” she said in an interview Wednesday at her Glens Falls district office.Little said she had 18 bills signed into law in 2014 and 18 in 2013.Another bill she is in the process of introducing would require checking for recall notices on cars and trucks as part of the annual state inspection process.The check can be done quickly and simply at a federal government website — safercar.gov.Little said replacing parts or components of vehicles covered under the recall would not be required to be done at the inspection site or to meet inspection.“It just is a notification. And we’re working with the Department of Motor Vehicles,” she said. “It’s up to the person to take it to the dealership and have that recall fixed.”Little said the mother of a young man who died in a car crash contacted her about the issue.The mother questioned if a recalled system in the vehicle might have been a factor in the crash.
Legislation:
Here is a sampling of the 16 bills that Sen. Little has sponsored since Dec. 1:* S2907 — Extend “the probable usefulness” of a boiler or furnace from 10 to 15 years so municipalities can spread out financing of biomass heating systems over a longer term.* S2387 — Authorize fire districts in towns to charge fire district taxes to otherwise tax-exempt nonprofit property owners. Nonprofit property owners now are required to pay water and sewer district taxes, but not fire district taxes.* S2388 — Establish a state commission to coordinate commemoration in 2017 of the 100th anniversary of women’s suffrage in New York.* S1914 — Authorize fire departments to bill insurance companies for emergency medical services.* S1853 — Exclude agricultural migrant workers from the state unemployment system because federal law prohibits them receiving benefits.* S1684 — Authorize campgrounds to file liens on recreational vehicles for unpaid campground charges.* S1851 — Require children under 14 to wear helmets when skiing and require ski areas to have “an adequate supply” of helmets available of rental.A complete list of legislation Little has sponsored can be viewed at: http://www.nysenate.gov/senator/elizabeth-little/legislation.
Projects:  Here is a sampling of special projects that Sen. Little is working on:* Working with Empire State Forest Products Association and Paul Smith College to develop a logger certification program aimed at attracting more young people to enter logging careers and to reduce workers’ compensation premiums.* Working with Adirondack Common Ground Alliance on a proposal to expand right of ways along roads from 25 to 50 feet in order to develop bicycle trails along the side of roads in selected areas of the Adirondack Park.* Promoting the new state I Love New York website, iloveny.com.* Attempting to convincing ABC “World News Tonight with David Muir” to feature Telescope Casual Furniture of Granville on its weekly “Made in America” segment.
Typical day in the district:  When Sen. Little isn’t in Albany, she often is traveling the six-county 45th Senate District.Here is her itinerary of a Feb. 13 visit to Granville:* Telescope Casual Furniture to learn about new wood pellet operation and plant efficiency initiative — “They have 280 employees in Granville.”* Hilltop Slate — “That’s pretty much being done the way it was being done 50 years ago. ... It’s amazing.”* Pember Museum of Natural History — “They have all new lighting and the place is like brighter than bright. All of a sudden you’re seeing things you didn’t see last time you went in there.”* Edwards Market — “That had been empty for so long. They have a nice group in there.”* Scotties’ Coffee Shop — “I said, ‘Hello’ to them. They always have a big crowd in there.”* Lunch at O’Callahan’s Pub & Grill — “We had a great day in Granville.”TagsElizabeth LittleState SenatorQueensbury


You can view the proposed NY State MITO bill by clicking on the link below


UMDF has graciously offered to join our local efforts in garnering support for the newly proposed MITO legislation in New York State.   
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!


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8/18/14

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.

Despite this few physicians recognize or fully understand mitochondrial disease!  Treatments, appropriate medical care and support services are extremely limited! 

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THE MANY FACES OF MITO
MITO awareness slide show for symposium and website
















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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,
Warrensburg.
NY 12885
Telephone - 518-623-2991




THANK YOU TD BANK and ALL of our Supporters, who are TD Bank Customers!!!!!!!!!!!!!!!!!
MITO HOPE and HELP was presented July 2014, with our Affinity Membership Donation from TD Bank in the amount of $824.40!!!!!!!!!!!!!!!!!!!!

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We hope to see you again!  Check back later for new
updates to our website. There's much more to come!
 
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