2020-12 - ROHHAD International Consortium

12-2020

Special Announcement for our ROHHAD warriors, their Families and all of our incredible charity supporters.

Our mission is to Find A Cure and we strongly believe that in time and with the continued support of all of you that our mission is possible and will happen.   To help us achieve this we do all we can to raise awareness and fundraise for medical research into ROHHAD Syndrome.

Between our charities we currently fund 5 ROHHAD Research Projects, 3 in the USA and Canada as well as a further 2 in Europe.  Working closely with the Research teams; it was very clear that everyone involved has the same goals and ambition which they hope will help their patients and ultimately lead to a cure.

After some hard work over the past 6 months and a number of meetings between all of the Research Teams and our charities we are delighted to share the amazing news that all have agreed to work together and we have formed the;

ROHHAD International Consortium

Our Mission is to work strategically and collaboratively as clinicians, researchers,charities, and families by raising awareness, expediting diagnosis, optimizing care,and ultimately finding a cure for ROHHAD, a rare orphan syndrome.

There will be sub groups of the ROHHAD International Consortium and one that will include our families and patients because each of you are crucial and vital in helping our mission succeed.

Over the holidays and in early January we will build the page for our websites and will soon be sharing our aims and methods as well as a full list of all our members.

We also hope to introduce to you all by the end of January too our new stakeholder sub group that will include patients and families from around the world.

All 3 of our children have ROHHAD Syndrome, Aaron, Marisa and Edwin.  Our charities were founded in the hope of finding a cure not only for our children but for every child and young adult with ROHHAD.  Knowing that everyone is now working together in the ROHHAD International Consortium fills all of our hearts with hope and we truly hope it does the same for all of you.

We are delighted to share this incredible news with you all today and we look forward to working together to help the ROHHAD International Consortium achieve its Mission.

Together we will #FindACureHappy

Holidays and a very Merry Christmas to all of our ROHHAD Warriors, their awesome families and our amazing charity supporters.

Much Love from:

Elisabeth (Lisa) Hunter, William and Danielle Carney,  Rudy and Kim Polese-Blyth

ROHHAD Association, ROHHAD Fight Inc and ROHHAD Association Belgium

2018-09 - PSEGLI Softball Fundraiser

09-2018

Thank you PSEGLI & Sam for arranging the day. We lost the final game but went down strong. Thank you to everyone who played.

ROHHAD Annual Golf Outing

06-28-2017

A big thank you to all volunteers and golfers!

Summer Flash Mob (Watch Me Whip Nae Nae)

09-12-2015

ROHHAD FIGHT, Inc. Flash Mob (Watch Me Whip Nae Nae)

Dr. Weese-Mayer/Osipoff Speaking about ROHHAD

06-04-2015

Jennifer Osipoff, M.D., FAAP Assistant Professor Pediatric Endocrinology and Debra E. Weese-Mayer, M.D.Cummings-Mayer Professor of Pediatric Autonomic Medicine, present Marisa's story with Rapid-onset obesity with hypothalamic dysfunction, hypoventilation, and autonomic dysregulation (ROHHAD)

NY Auto Giant donates $100,000

12-17-2014

The nonprofit organization founded for a Bayport girl with a rare obesity disorder will receive its largest single donation Wednesday -- more than $100,000 -- from Atlantic Auto Group.

ROHHAD Fight Inc., started by the family and friends of Marisa Carney to promote awareness and fund research into the disorder, will be presented with a check at Atlantic Auto Mall in West Islip at 4 p.m.

Thank you NY Auto Giant for your support!

READ THE FULL ARTICLE FROM NEWSDAY

Mannino's Car Show

07-22-2013

Mannino's Car Show

All raffle monies were donated to ROHHAD Fight Inc.

ROHHAD Awareness Month Declared

04-29-2013

State lawmakers passed a resolution declaring May 2013 ROHHAD Awareness month, honoring 7-year-old Long Island girl diagnosed with the rare obesity disorder.

Assemblymen Andrew Garbarino (R-Sayville) and Al Graf (R-Holbrook) presented a copy of the resolution to Marisa Carney of Bayport on the floor of the state Assembly.

"This is something small I can do right now", said Garbarino, who as a political candidate met her mother last summer at a Bayport library reading event.  "Maybe someday it will be one of those rare diseases that will be tested at birth.  At least this is a way I can help them bring awareness. You got to start somewhere."

READ THE FULL ARTICLE FROM NEWSDAY

Good Job, Marisa!

09-24-2011

Ten little girls in pale-blue leotards and tulle skirts line up by the balance bar, waiting for ballet class to begin.

Some fidget with their soft pink slippers. Others dance with their reflection in the wall-length mirror.

Marisa Carney stands still at the end of the line, her round face a mask of concentration.

READ THE FULL ARTICLE FROM NEWSDAY

Gloria Gaynor plans tribute to LI girl

06-22-2011

Marisa Carney loves to dance, and Gloria Gaynor wanted to provide the ballad and the beat.

The Grammy-winning singer performed her disco-era hit "I Will Survive" in a tribute to the Bayport girl Friday night at the NYCB Theatre at Westbury. 

READ THE FULL ARTICLE FROM NEWSDAY

Marisa: A little girl's fight to live

06-19-2011

The story of Marisa and her battle with ROHHAD.

READ THE FULL ARTICLE FROM NEWSDAY