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



Thanks for visiting!





Watch Mitochondrial Disease on PBS. See more from Health Link.


A very serious topic, Munchausen by proxy and/or medical abuse, which I touched upon in my interview with WMHT, is currently being addressed by Mito Action. 
I received a newsletter from Cristy Balcells the exec. director of Mito Action  today, 7/17/13.   If  anyone has gone through / is going through this traumatic nightmare please contact Cristy directly at www.director@mitoaction.org

  THANK YOU, MITOACTION!!!
___________________________________________________________

 
 Delays in diagnosis impacts many in the MITO community. 
Please take a moment to read the following petition prepared by Ed Fennel, one of our local advocates for children with complex care needs.
 
 
NYSRDA
Nationwide Petition 

The length of the diagnostic process is testimony to the lack of knowledge that exists within the field of medicine regarding rare disorders; the lack of a diagnosis is a major roadblock to identifying the number of people affected, the manner in which they are affected and ultimately stymies science that secures cures and treatments.
That's why I created a petition to The United States House of Representatives, The United States Senate, and President Barack Obama.

Will you sign this petition? Click here:


Thanks! 

Edward J Fennell
President NYS Rare Disease Alliance
Coordinator, Albany Medical Center's Rare Disease Forum
2226 East Schodack Rd.
Schodack NY 12063
518-729-4262 h
518-285-9701 c
Efennell43@gmail.com
nysrda.com 

   


______________________________________________________________________
WELCOME HOME JUSTINA!!!!!!!!!!!!


You can find more articles on Justina by visiting our NEWS page.

_______________________________________________________________________________


WE LOVE YOU, CHERYL CLOW RN!!!!
Albany Medical Center’s Employee of the Year for 2013!







It is with great pleasure that I am able to share a piece of news with you today regarding Cheryl Clow, RN in Genetics.  Cheryl Clow was recognized today by James Barba , CEO of Albany Medical Center as Albany Medical Center’s Employee of the Year for 2013!

 

To receive Employee of the Year is a tremendous commendation which recognizes the gifts that Cheryl brings to the department as an employee and individual on a daily basis.  Cheryl was not only nominated for this award by her colleagues but by patients and families that she has worked with over the years that she has been at Albany Medical Center.

 

Cheryl’s commitment to patient and customer service and ability to provide care in a manner that embodies the spirit of Albany Medical Center were outlined in the letters that the committee received. She was chosen from a pool of candidates that included the hospital, the college, and the center.  The many strengths that Cheryl brings to her exchanges with patients and unwavering commitment to best care sealed the nomination .

 
_____________________________________________________________________________




You need Flash Player in order to view this.
THE MANY FACES OF MITO
MITO awareness slide show for symposium and website













______________________________________________________________


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 continually strive to represent, unite and offer support to hundreds of individuals and their families living with, and /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, geneticist 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.
 
 
We can all 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.
 

 
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!!!
 
 
Marcella Towers
VP. Store Manager Warrensburg,
TD Bank, America's Most Convenient Bank,
3852 Main Street,
Warrensburg.
NY 12885
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!
 
 
 
 
Website Builder provided by  Vistaprint