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



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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!!!
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4/7/13 - The link below will take you to part one of the Mike Huckabee Show, which aired 4/5/13 on FOX in support of Justina Pelletier and her family.


Link to part two of the Mike Huckabee Show on FOX aired 4/5/13




For those of you who don't know the Pelletier family and why MITO HOPE and HELP is continually featuring their story on our website please read;
Justina Pelletier is a fifteen year old girl from Connecticut who has mitochondrial disease.  Like so many MITO families, including ours, the Pelletiers must travel to Boston to receive the specialized, coordinated medical care MITO patients require that is not available to them locally. 
In 2013 when Justina became ill, and suffered with increased GI problems, she was taken to Boston Children's Hospital because her GI doctor had recently moved from TUFTS medical center in Boston to Children's hospital in Boston. 

Chaos ensued when a few physician's at Boston Children's Hospital decided they disagreed with Justina's diagnosis of mitochondrial disease.  She was kidnapped from her parents, locked in a psychiatric ward and remained there for over a year with little to no justification.  Proper protocols were not followed and the whole inconceivable traumatic event has left Justina and her family separated.  In addition Justina has not received the essential care she desperately needs for her mitochondrial disease. 

Sadly Justina and her family are not alone.  A large number of families, including my own, have been subjected to similar torment by some of Boston Children's Hospital physician's.

We stand, as a unified MITO Community, to put an end to this senseless and detrimental treatment of MITO patients.



You can find more articles on this subject and the Pelletier Family by visiting our NEWS page.

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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 .

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











THANK YOU, TO ALL THE HEALTHCARE AND SUPPORT SERVICES PROVIDERS WHO ATTENDED OUR
2ND ANNUAL MITOCHONDRIAL DISEASE SYMPOSIUM NOVEMBER 13, 2013!
A recap and photos can be found on our EVENTS page.
MITO HOPE and HELP would also like to acknowledge and thank the following supporters for making our symposium possible:
Solace Nutrition,  Empire Home Infusion Services, Nutricia NA, Vitaflo USA, The National PKU Alliance,
The Lake George Rotary Foundation,
The Thomas Patrick Morrison Foundation,
Double H Ranch, and St. Cecilia's Catholic Community of Warrensburg


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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 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

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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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