MITO HOPE and HELP
Reaching out to individuals living with Mitochondrial Diseases
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Mark your calendar!
- PAST EVENTS-
- PAST EVENTS-
2019 MITO HOPE and HELP Mitochondrial Disease Symposium
Wednesday, November 13, 2019
Hilton Garden Inn, Albany Medical Center
8:30 am - 3:30 pm
MITO HOPE and HELP's
7th Annual MITO Family Fun Day
was combined with a
Western Themed Gala this year,
"GIVE MITO THE BOOT"
Sunday, June 3, 2018; Inside Charley's Saloon, in Ghost Town, at the Great Escape/Splashwater Kingdom
RARE DISEASE FILM FESTIVAL
RARE DISEASE FILM FESTIVAL
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) of our 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.
Each film maker attending had an opportunity for questions and answers with the audience following the presentation of their film.
Between our slates of films rare disease researchers and patient advocates also shared stories from their experience.
We believe increased awareness can connect patient families, lead to more research and save lives. These films put the often abstract and dire clinical information into the context of real people living their lives.
MITO HOPE and HELP'S 6th Annual MITO FAMILY FUN DAY
Sunday, June 11th 2017
October 30th 2015:
MITO HOPE and HELP's
4th Annual Mitochondrial Disease Symposium.
Please visit our 2015 SYMPOSIUM RECAP page, where you can view photos, powerpoint presentations and an overview of this event.
June 7, 2015
The smiles on their faces says it all!!!
Many thanks to our generous supporters who made our 2015 MITO Family Fun Day possible.
Offering our MITO Community the opportunity to come together is priceless! Every year new families join us and old friends are reunited.
MITO HOPE and HELP represented our MITO Community at NORD's 2015 Rare Disease Day event held in Albany New York.
Assemblyman John McDonald and Senator John Bonacic spoke along with a number of patients and organizations, including MITO HOPE and HELP.
Mitochondrial disease was a focus topic this year.
Thank you to NORD for sponsoring this valuable opportunity and to Jennessa Freihofer for spearheading the 2015 Rare Disease Day event!
Those representing MITO HOPE and HELP were,
Catherine LaFond-Evans, Jennifer McCullough and Angelina Hayner.
Please visit our 2014 3rd Annual MITO Symposium page for a recap of our symposium.
MITO HOPE and HELP held it's 3rd Annual Mito Family Fun Day at the Great Escape on Sunday June 8th, 2014.
This year's Family Fun Day was made possible in part by the Golub Foundation / Price Chopper, Stewart's Holiday Match Program and TD Bank.
We thank these local businesses for their generosity and support of our MITO Community!!!
"Miracles in the Mountains for MITO"
An informal FUN Gala, to benefit MITO HOPE and HELP was held April 26, 2014 at The Lodge on Echo Lake.
The following Gala speech was presented by:
Catherine LaFond-Evans, founder of MITO HOPE and HELP.
I’d like to thank you for coming out tonight and for your support on behalf of our entire MITO Community!
While this may be our first Gala,…. since MITO HOPE and HELP’s inception in September of 2010, we have been very active in the community and I’d love to share with you just some of what we’ve been able to accomplish over the past 3 ½ years.
Our primary focus is on providing more of the specialized, coordinated medical care and support services that are so vital to the well-being of those living with Mitochondrial disease.
The majority of our MITO community remains in desperate need of these basic essentials, which are significantly lacking on all levels. For our adult MITO patients they are basically non-existent.
We’re addressing these crucial issues via our multidisciplinary team, which consists of staff from WWAARC and the genetics and metabolism Dept. at Albany Medical Center. Together, we’re diligently working to fund a MITO Nurse Practitioner liaison who will be instrumental in helping fill the current void that exists.
Additionally, we recognize that education and communication, in our local communities, is also a key component to improved patient care.
It is an understatement to say, Mitochondrial diseases are poorly understood and under recognized.
Sadly, and all too often this leads to MITO patients and their families being subjected to further unnecessary pain and suffering. The ensuing consequences stemming directly from this tremendous lack of knowledge and understanding of mitochondrial diseases can be every bit as devastating, if not more so, than MITO itself. An example of this, many of you may be familiar with, which has thrust Mitochondrial disease into the national spotlight over the past year, is the Justina Pelletier story.
This November will mark our 3rd Annual Mitochondrial Disease Symposium, an invaluable opportunity MITO HOPE and HELP offers to local healthcare and support services providers.
Another event we are proud to offer is our Annual MITO Family Fun Day at the Great Escape. All MITO patients and their families are treated to a FUN filled day, but most importantly they have a rare opportunity to come together, form bonds and share experiences with others who are living and dealing with the multitude of problems which are unique to Mitochondrial disease.
Fortunately, MITO HOPE and HELP is not alone in offering help to our local MITO community in the surrounding 26 counties of Northeastern NY.
It is a GREAT pleasure for me to be able to network with our allies in the local MITO community who aid us in our ongoing mission and compliment our efforts.
Some of MITO HOPE and HELP’s partners are here with us tonight and I’d like to acknowledge them:
First, is our parent organization, N Y State ARC, Warren, Washington and Albany Counties Chapters. Staying true to ARC’s founding families mission, they reached out to MITO HOPE and HELP, offering not only their vast array of resources but a commitment to helping us meet the numerous unmet needs of our MITO community.
We have with us tonight, Anne-Marie Lockhart, board president of WWAARC.
She is also tonight’s Honorary Chairperson.
Besides my parents, Roland and Sandra LaFond, who have always been there for my family and me in every way possible, there’s not one person who has helped us more throughout our daily, ongoing, uphill battles associated with MITO than Anne-Marie. She first came into our lives as my daughters’ teacher of the visually impaired. She’s gotten to intimately know our family over the past 25 plus years and there’s nothing she hasn’t been through with us, making her our greatest advocate and dear, special friend!
John Von Ahn, the executive director of WWAARC, has also taken time to join us on this special occasion.
As well, we have Jennifer McCullough, WWAARC’s new Senior Director of PR & Development, along with Peter Guidarelli WWAARC’s Director of Grants and Government Relations. Jen and Peter are also integral members of our multidisciplinary team.
We have some of our genetics and metabolism team from Albany Med with us:
Dr. Natasha Shur, is this regions newest and only clinical geneticist. She joined Albany Medical Center’s genetics and metabolism dept in September 2013, and has quickly become an outspoken advocate for her patients. You’ll hear from Dr. Shur a little later this evening.
Cheryl Clow, RN and metabolic clinical care coordinator, (who is often confused with Julia Roberts , what can I say, she makes me say this whenever I introduce her.)
Actually, Cheryl is a local celebrity, she was Albany Medical Center’s 2013 employee of the year! Our MITO community is very lucky to have Cheryl, and this is a distinction well deserved. Her devotion to all the patients she cares for goes above and beyond her job description. If we could only clone Cheryl we’d be OK!
I’d also like to acknowledge another member of our local genetics and metabolism dept even though she couldn’t be with us tonight. Kayt Marra, who is a certified nutritionist and dietician, has been one of MITO HOPE and HELP’s biggest sources of guidance and support from the beginning. Her commitment to helping others is remarkable, she selflessly gives up her spare time to help several local rare disease and non-profit groups. In fact that is why she couldn’t be here, she’s attending an international genetics and metabolism conference in Dallas Texas offering her expertise, advocacy and support to others.
All three of these exceptionally dedicated individuals work around the clock for our local Mito community! LITERALLY, they have to because these three individuals are our MITO communities only trained and knowledgeable MITO providers, whom we all rely on 24/7.
Throughout the year, MITO HOPE and HELP proudly joins forces with two local non-profits who are also committed to raising awareness about mitochondrial disease. They offer financial support to children and their families, broadening the aid we can provide our MITO community.
The first is: Amanda’s Journey Foundation, which was created by Jackie and Louis Perrotta in memory of their daughter Amanda who passed at age 16 due to mitochondrial disease. The second is: The Thomas Patrick Morrison Foundation, established by Carmelina and Tim Morrison to carry out their infant son Tommy’s legacy, who’s life was also claimed by MITO.
We would not exist nor would any of our work be possible without the support we receive from ALL of our supporters!
Whether you’re one of our devoted ongoing supporters, or this is your first time supporting MITO HOPE and HELP, I want you to know that we rely solely on fundraising events like tonight’s Gala and others throughout the year to fund all of the events and services we provide to our entire MITO community.
I founded MITO HOPE and HELP, in memory of my oldest daughter, Randi. She and I often spoke of and envisioned a day when every MITO patient would have available to them appropriate and adequate medical care and support services administered by trained, knowledgeable providers.
Randi’s ultimate dream was to have a special hospital, similar to St. Jude, for MITO patients of ALL ages.
While we realize Randi’s ultimate dream is a ways off, our deep grass root efforts have taken hold.
Thank you everyone, for sharing our vision, it means a great deal to my family and me!
THANK YOU FOR YOUR CONTINUED SUPPORT!
We have many individuals and businesses to thank for making “MIRACLES IN THE MOUNTAINS FOR MITO” such a wonderful success!
I’d like to start with our Honorary Committee, Roland and Sandra LaFond, John Von Ahn and Anne- Marie Lockhart our Honorary Chairperson.
Our GOLD level, PLUS, Sponsor: St Cecila’s Catholic Community and Pastoral Council
Our SILVER Level Sponsor: Glens Falls National Bank and Trust Company
Our BRONZE level Sponsors:
Kevin Luibrand of Luibrand Law and
Dr. Frederick Dreher
Lizzie Keays, Denise and Shawn Lamouree, Lake George Steamboat Co., Six Flags / Great Escape, Jimmer Fredette Family Foundation, Jan Higgins/Hobby Horse Playschool, St. Cecilia’s Pastoral Council, Anne and Al Rohe, Lisa and Wayne LaMothe, Kayt and Michael Marra, Roland and Sandra LaFond, Anne-Marie Lockhart, Frederick Dreher DDS, PC, Richard and Joan Ouellette, Marjorie Peters, Pauline Dusek, Paul and Kathy Dusek, Peggy LaFond, Kerri and Andrew Shpur, Hildy and Dale Monroe/ Adirondack Landscaping, Florence Lapoint, Father Paul Cox, Adam and Taryn Hadcock.
In addition I want to thank our dear friends from Adirondack Ambiance, Al and Anne Rohe . Anne Rohe sold her beautiful Adirondack note cards at our Gala to benefit MITO HOPE and HELP. The Rohe’s are the artisan’s who handmade and hand-painted the Adirondack chairs for our silent auction. Throughout the year they also help out with our many endeavors of raising awareness and funds for MITO HOPE and HELP.
A special thanks goes out to Dr. Natasha Shur for honoring us with her presence and presentation. Our Mito community is very appreciative that you took the time from your very busy schedule, juggling your roles of motherhood and physician, to advocate for us and support us.
Thank you to Seeley Office Systems for creating and printing and our Gala programs free of charge! Your generous contribution will allow us to offer our MITO community more of the crucial services they so desperately need.
TY to Sandra LaFond for making the cupcakes.
TY to DJ Dawn from Dancin’ Time.
TY to The staff at the Echo Lake Lodge for your help and service!
And last but not least, a BIG Thank you to EVERYONE who purchased tickets and attended our Gala!
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MITO HOPE and HELP is committed to working
with our ENTIRE Rare Disease Community!
We started our day off with Dr. Adams' presentation:
"ADVANCES IN PKU THERAPEUTICS"
Darius Adams MD,
Dr. Adams completed his internship and residency in genetics at the Mount Sinai Medical Center in NYC, where he received comprehensive training in genetics and dysmorphology. He remained at Mount Sinai for an additional year to complete a fellowship in Metabolic / Biochemical Genetics.
Dr. Adams was certified as a Clinical Geneticist by the American Board of Medical Genetics in September 2002 and 2012 and as a Clinical Biochemical Geneticist in September of 2005.
Dr. Adams joined the pediatrics dept at Albany Medical Center in July 2003 as an attending physician and Assistant Professor. He is now director of the Personalized Genomic Medicine Program at Atlantic Health System in Morristown, NJ and continues to consult with the Division of Genetics and Metabolism at Albany Medical Center.
Cathy Founded MITO HOPE and HELP in September 2010, in memory of her daughter, to ensure Randi's dream becomes a reality...
EVERYONE LIVING WITH MITO WILL HAVE AVAILABLE TO THEM THE SPECIALIZED, COORDINATED, MEDICAL CARE AND SUPPORT SERVICES WHICH ARE CRUCIAL TO THEIR WELL-BEING!
Cathy presented an overview of how MITO affects us and the daily challenges we are forced to endure. Many brought about or compounded by the tremendous lack of essential, appropriate, medical care and support services.
Our Symposium touched upon a full spectrum of not only the scientific and clinical aspects associated with MITO but the all important patient perspectives on Mitochondrial diseases as well.
Carmelina and her husband Tim created The Thomas Patrick Morrison Foundation to honor their son, Tommy's legacy.
Carmelina shared Tommy's "Baby" MITO story with us.
Jackie and her husband Louis established Amanda's Journey Foundation so they could carry on the mission their sweet daughter, Amanda, began; helping other children and their families living with Mitochondrial Disease.
Jackie shared Amanda's "Child" MITO story.
Lisa presented her MITO story, an
"Adult" MITO patient's perspective.
One of the biggest misconceptions about MITO is that it only affects babies.
Cheryl Clow RN
Cheryl is currently working as the RN in the Section of Genetics / Metabolism at Albany Medical Center. She began her career 23 years ago with AMC working for the Dept. of Pediatric Endocrinology, where inborn errors of metabolism and the new born screening program was first located. She obtained her certification of Diabetes Educator during that time. Cheryl has worked in the section of Genetics for the past 10 years, facilitating care for newborns with metabolic disorders and working with the mitochondrial disorders population.
Cheryl presented: "PROVIDING CARE FOR THE MITO PATIENT and
"CASE PROFILES OF HOW MITO AFFECTS MULTIPLE BODY SYSTEMS"
Kayt Marra MA,CD-N
Mrs. Marra completed her Bachelor of Science in 1993 and Master of Arts in Social Policy in 2011 both at Empire State College.
She is a Certified Dietician-Nutritionist in NY. She is a member of the Society of Clinical Research Associates and Genetic Metabolic Dieticians International.
Kayt has spent the better part of the past 30 years at Albany Medical center. In 2003 she returned as an interim dietician in the Section of Genetics and Metabolism and never left. She enjoys creating novel educational programs that assist patients in developing the skills necessary to manage chronic disease. Her additional professional interests include research and grant writing.
Kayt presented: "NUTRITION AND MITO & INSURANCE HURDLES" and
"COVERING MITO TREATMENTS"
Natasha Shur MD
Dr. Shur completed her medical education at the Albert Einstein College of Medicine. She completed both her pediatric residency and genetics training at Montefiore Medical Center. She then taught at Brown University and worked at Rhode Island Hospital for 5 years. Currently, she is a clinical geneticist at Albany Medical Center. She has expertise in dysmorphology and the genetics of twinning.
Dr. Shur presented: "VACCINES AND MITOCHONDRIAL DISEASE: THE MEDIA VERSUS THE AMERICAN ACADEMY OF PEDIATRICS"
Dr. Adams presenting: "THE SCIENCE BEHIND MITOCHONDRIAL DISEASES AND DIAGNOSIS"
John Nash LMSW
John Nash's early years in human services were spent sharing his creative energy with children who were emotionally challenged in settings such as psychiatric units, residential treatment, and schools. He then went on to obtain a Masters degree in Social Work and graduated from the State University of New York in 1994. After graduation he worked as a medical social worker with a visiting nurses program with people affected by HIV and AIDS. He then spent 6 years working for a Hospice program as a medical social worker and coordinator of the bereavement program. Since August of 2001 he has worked in the capacity of a Medical Social Worker at the Cystic Fibrosis Program and the Pediatric Genetics Department at Albany Medical center.
John presented: "ENHANCING COMMUNICATION AND BUILDING RELATIONSHIPS: THE KEY TO END OF LIFE CARE"
We rounded-out our day with a PANEL DISCUSSION
MITO HOPE and HELP would 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
We would also like to thank Mary Doherty, mother of three children with Mitochondrial disease. Mary volunteered and joined our panel discussion.
Taryn and Adam Hadcock, parents of two teens with MITO who were invaluable volunteers.
WWAARC, our parent organization, for their continued support!
And to ALL, who played a part in making our 2nd Annual Mitochondrial Disease Symposium a success, THANK YOU!!!
Below is just one of many positive responses we received from attendees at our 2013 Symposium:
"I was so impressed by your team on Wednesday. Your patients are lucky to have you."
TO THE MOON AND BACK FOR MITO GALA
Amanda's Journey Foundation Is celebrating 5 years of continuing Amanda's legacy of supporting children and their families with MITO!
The gala will be held at Moscatello's Restaurant, 99 North Greenbush Road, (Route 4) Troy NY, 12180 on November 16, 2013.
PLEASE help the Perrotta's celebrate this milestone and their unwavering commitment to our local MITO community!
Jacki and Louis Perrotta
MITO HOPE and HELP is committed to working with our rare disease community! We have a long-standing relationship with the PKU sector so please consider attending the upcoming fundraiser in honor of Logan.
September 15th 2013, kicked off Global Mitochondrial Disease Week and
MITO HOPE and HELP began this important week-long awareness campaign by showing Rina's Magic Bracelet movie at the Great Escape.
It was good to see everyone again!!! Help us spread the word all year-long!
For those of you who missed it, here's a clip form
Rina's Magic Bracelet Movie
TO THE MOON AND BACK
2013 WALK FOR MITO
In memory of Amanda Perrotta
Sponsored by Amanda's Journey Foundation
September 29th, 2013
This year's walk will be held in Schenectady Central Park
For further details please visit amandasjourney.org
MITO HOPE and HELP's 2nd annual MITO Family Fun Day June, 2nd 2013
This rare, yearly opportunity for our local MITO community to come together is FREE for our MITO families and made possible by generous supporters in our communities!
The weather didn't cooperate for long but the majority of our families were able to attend and enjoy the Great Escape and each others company for a few hours!
Everything MITO HOPE and HELP does is dedicated to and in memory of ALL our MITO angels! Forgot to mention this at our Family Fun Day!
They forgot my microphone!
Thanks again to Melissa Cummings for coming to the rescue and taking pictures!
THANK YOU St. Cecilias Catholic Community!!!
Once again, this Lent, the Catholic Community of St. Cecilia's in Warrensburg NY has offered their support to MITO HOPE and HELP in the form of alms and prayers. MITO HOPE and HELP proudly updated our supporters at St. Cecilia's, this first week of Lent, about all the strides we've been able to make for our MITO Community over the past year with their on-going help. Please visit our NEWS page for more details.
November 13, 2012 - Fort William Henry, Lake George, NY.
1st annual MITO SYMPOSIUM sponsored by MITO HOPE and HELP
with support from Solace Nutrition.
Our 2012, MITO symposium was made possible because of the combined efforts of many!
THANK YOU to Dr. Darius Adams, for speaking, all of the time spent filling out yet more paperwork and preparing for this event. Your ongoing commitment to our MITO community is truly OUTSTANDING!
THANK YOU Cheryl Clow, RN, Dr. Adams nurse and right hand woman. She is also always involved in helping making a difference in the lives of our MITO community. Cheryl was involved with a great deal of behind the scenes preparations.
THANK YOU Kayt Marra, certified dietician and so much more, who also works with Dr. Adams and Cheryl. These are the three people, locally, who come to mind whenever MITO is mentioned. They are the three individuals, for whom we, the MITO community rely on 24/7.
THANK YOU to our volunteers, who manned our reception tables, Lisa LaMothe, Sandra LaFond, and Mrs Anne Rohe, who also graciously donated all sales of her beautiful Adirondack note cards at the symposium to benefit MITO HOIPE and HELP.
THANK YOU to our dear friends Jacki and Louis Perrotta for joining us and representing Amanda’s Journey Foundation, established in memory of their sweet angel daughter Amanda.
THANK YOU to Solace Nutrition for their support and to Nancy, Tom and Roman for all of your help!
THANK YOU to Empire Home Infusion Services for joining us.
THANK YOU to Ms. Kim Ladd our photographer and editor of our beautiful and informative profiles which were located in the lobby.
THANK YOU to all of those in our MITO community who shared their MITO stories and photos!
THANK YOU to WWARC, more specifically Mr. John Von Ahn, Executive director of WWARC and Anne Marie Lockhart the president of the board of WWARC. From the very beginning WWARC reached out to MITO HOPE and HELP, in turn allowing MITO HOPE and HELP to offer our MITO community the help and support that is so desperately needed!
THANK YOU to all of the staff at the Fort William Henry who helped make our symposium a success.
And last but not least, we want to THANK everyone who attended our MITO Symposium on mitochondrial diseases.
TOGETHER WE CAN MAKE A DIFFERENCE!!!
Please also be sure to visit amandasjournery.org, and click on their NEWS page. Watch the video/slide show which perfectly captured the passion expressed at our MITO SYMPOSIUM.
On Saturday October 6th 2012 the Cummings family held its 3rd annual "Shawna's Walk For Wishes." Shawna along with her brother and their mom all have MITO and belong to our local MITO community.
You can learn more by visiting Shawna's Walk for Wishes page at the link below.
Melissa Cummings -
Thank you to all who came out and shared the beautiful day. You helped make wishes come true, we raised $10,000!!!! Amazing job everyone!
The Cummings Family
On Saturday September 22, 2012 The Perrotta family hosted a family fun day at Snyder's Lake. As many of you know Jackie and Lou Perrotta lost their daughter, Amanda, to mitochondrial disease in 2008.
In Amanda's memory they established Amanda's Journey Foundation, amandasjourney.org
MITO HOPE and HELP's 1st Family Fun Day at the Great Escape.
It was great to see everyone reunite with previous acquaintances while also getting to meet new members of our MITO community! Those gathered, represented a broad spectrum of ages, many different forms of MITO and individuals in various stages of this disease. Regardless, we all have one thing in common, we are all living and dealing with MITO!
MITO HOPE and HELP was founded in memory of Randi.
However, MITO HOPE and HELP was created and exists for ALL of us and our families, living with MITO.
MITO HOPE and HELP is dedicated to ALL of our loved ones lost to MITO.
MITO HOPE and HELP welcomes YOUR participation because together, as a UNIFIED MITO COMMUNITY, we can make a difference!!!
Thank you to Anne Marie Lockhart, president of New York State ARC, Warren and Washington Counties chapter, for speaking at our Family Fun Day. WWARC reached out to MITO HOPE and HELP from the start. MITO HOPE and HELP is privileged and honored to join forces with an organization that is so highly recognized and respected in our community for outstanding service to individuals with special needs of all ages.
I also want to thank all of MITO HOPE and HELP's supporters and volunteers who have given of themselves and/or donated throughout the year, to make such an event possible!!!