2015 Troy Hilton Garden Inn
Catherine LaFond-Evans, founder of MITO HOPE
It is my sincere
pleasure to welcome you to MITO HOPE and HELP’s 4 Annual
Mitochondrial Disease Symposium.
symposium is jointly sponsored by Albany Medical College.
start, I would like to acknowledge and thank a few other key individuals and
organizations who have also helped make today’s symposium possible.
The Thomas Patrick Morrison Foundation,
The United Mitochondrial Disease
Vitaflo USA, LLC
Double H Ranch
Amanda’s Journey Foundation
The New York State Rare Disease
The Oley Foundation
And our parent organization; Warren, Washington
and Albany Counties Chapters of New York State ARC.
and HELP’s dedicated symposium committee members work throughout the year planning,
organizing and executing our symposiums.
I’d like to thank each of them: Anne-Marie Lockhart, Cheryl Clow, Kayt
Marra, Lisa and Wayne LaMothe, Julie Gortze, and MaryBeth Hollinger.
more than ever before, our symposium is deeply rooted in solidarity.
All of the MITO organizations represented and/or
present here today, both on the local and international level, were all founded
by parents of children with mitochondrial disease. The TPMF was established by Carmelina and Tim
Morrison to honor their infant son Tommy’s legacy; Amanda’s Journey Foundation
was created by Jackie and Louis Perrotta in memory of their precious daughter
Amanda; The United Mitochondrial Disease Foundation was founded by Mr. Charles
Mohan in memory of his beloved daughter Gina; MitoAction was founded by patients, parents, nurses and
physicians in Boston.
I founded MITO
HOPE and HELP, 5 years ago, in memory of my oldest daughter, Randi, as a means
to improve care for my other children and all others suffering from this
All of our
children have or had different forms of mitochondrial disease.
children, succumbed to mitochondrial disease, at various ages, ranging from infancy
-through young adulthood. However, the
one thing we ALL share, based on our own experiences, is the desire and passion
to make a difference in the lives of others living with mitochondrial disease.
be happier with how our MITO Communities grass root efforts have taken hold,
grown stronger and deeper, and are now intertwined.
significant progress, we’ve made and are realizing on this front, it deeply
saddens me to once again have to stand before you and reiterate that basic
needs and services still elude the majority of our MITO patients and their
As I strive
to make the changes that need to be made, along with my fellow colleagues, I am
repeatedly told to be patient and wait because change takes time.
and I have been dealing with mitochondrial disease for 32 years now and enough
patients and their families ask for, is what anyone else suffering from a
serious, chronic, deteriorative and potentially deadly disease wants, and
expects; adequate appropriate medical care and support services administered by
trained professionals on a daily basis.
It’s time we
close this chapter in the status quo of how we deal with mitochondrial
the page and start a new chapter!
We can no longer
stand by and watch our loved ones suffer needlessly when there are special
diets, treatments, medications, supplements and the like that can mitigate some
of the symptoms associated with mitochondrial disease. For some MITO patients, some of these
treatments provide a marked improvement in symptoms associated with their
mitochondrial disease, allowing them improved functionality. The costs associated with non-covered medical
necessitates should not be the determining factor as to who will receive help
and who will not! For those families who
have multiple members affected by MITO, these expenses are prohibitive and the
overall financial impact associated with all of the non-covered expenses is
overwhelming. At last year’s symposium
we focused our efforts on addressing this specific issue. Senator Betty Little and Assemblyman John
McDonald acknowledged this aspect of our MITO Community’s unmet needs and
crafted legislation, which was further amended to ensure New York State legislation
has the greatest impact and will benefit all members of our MITO Community. A number of our legislators have joined us
today because they are committed to continuing to help our MITO Community.
our voices, our actions, and suffering of our loved ones was not enough to
enact MITO legislation last year in New York State. Kayt Marra will share more on our legislative
efforts and the status of such later in today’s group panel discussion. You will find an insert in your folders titled
“UPDATE ON PROPOSED NEW YORK STATE MITO LEGISLATION” it contains the language,
bill numbers and other specifics pertinent to our proposed NY State MITO
legislation. Links are provided so you
can easily find your representatives are and their contact information.
We also have
a MITO Legislation Petition station setup at UMDF’s table in the hallway. Sherri Schultz, one of our legislative committee
members, will be collecting signatures.
Anyone who is a resident of NY State can sign the petition to support
we are also working with NY State’s Commissioner on Health and the Governor to
ensure mitochondrial disease is recognized for the serious disease that it is
and added to the list of qualifying conditions for the use of medications such
as marinol and/or medical marijuana. These
medications are amongst those being used to mitigate some of the common
symptoms associated with mitochondrial disease such as diffuse difficult to
manage pains and severe, chronic nausea.
No longer is
it acceptable to only receive care from a mitochondrial specialist, who
understands and can help, once or twice a year.
Our MITO Community desperately needs knowledgeable, trained health care
professionals involved in their day to day care!
If you are a
MITO patient and have had the good fortune of having received care from a physician familiar with mitochondrial
disease, then you know there is a stark difference between receiving
appropriate care and not.
involved knows what is needed in order to turn this tide:
a few hundred cloned copies of our MITO specialists wouldn’t hurt either!
We are very fortunate
to have with us today, two of this country’s leading metabolic specialists; Dr.
Mark Korson and Dr. Darius Adams. They
have both dedicated their lives to helping our MITO Community and we can’t
thank them enough. It is no small feat
considering mitochondrial disorders are by far some of the most challenging,
complicated, and high needs disorders to manage. They deserve the utmost respect for their
continued commitment in the face of all the adversities that they too often
face in order to help us.
I don’t want
to forget to acknowledge Albany Medical Center’s genetics and metabolism team
members who are also with us here today.
These dedicated health care professionals are there for us every day in
the trenches, trying to do the very best they can for all of us with the
extremely limited resources they have available to them.
and resulting trauma caused to our MITO population by those who don’t
understand mitochondrial disease, is not only unwanted on top of dealing with
this devastating disease in of itself, but unnecessary!
All of the
above mentioned issues directly stem from the tremendous lack of knowledge and
understanding that surround mitochondrial disorders.
HOW GREAT THE DAY…. HOW GREAT THE DAY
MITO patients can walk into one hospital and be cared for by heath care
professionals, who not only understand MITO but ALL of the unique
manifestations it can cause!!!
This was my
daughter Randi’s dream! She and I talked
about and envisioned the day when this would be a reality!
day there is a cure for mitochondrial diseases, we must continue to forge ahead
as a unified MITO Community towards Randi’s dream. A goal we all share!
I thank you
for attending our symposium and hope that you leave here today with an
indelible appreciation and understanding of mitochondrial disease. I also want to challenge each of you, to take
the information you’ve received today and build upon it. Please use it to help our MITO population. Everyone here can in some way, make a
difference in the lives of those living with mitochondrial disease!
WE CAN, AND WE WILL!
Darius Adams MD
Medical Director of the Goryeb Children’s Hospital Genetics
and Metabolism Division in addition to the Personalized Genomic Medicine
Program at Atlantic Health System.
NUTS and BOLTS of the ENERGY PATHWAY:
Jon Dorflinger CEO/Founder The Saratoga Film Academy
Producer of our MITO Community's film trailer, which is a teaser to the full length MITO documentary Jon is working on.
"THIS IS MITO"
MITOACTION: Represented by Julie Gortze and MaryBeth Hollinger-
Julie Gortze is an RN, mother of four, and is suspected of
having mitochondrial disease. She worked
in pediatric home care and sub-acute care before finding her niche in acute
care at a local community hospital in her home state of MA. After dealing with symptoms for most of her
life, new issues in 2008 kept her from continuing the job she loved. She has had the unique experience of learning
about this complex and overwhelming disease from both sides, as the patient and
the medical caregiver. Julie has become
very passionate in the cause and need for support, education and advocacy for
those affected by complex disease, including Mito. She has organized a support group for people
with Mito in Southern Massachusetts, recently partnering with MitoAction to
become MitoAction New England, sponsored by Acton Pharmacy, and strives to
coordinate educational offerings for those people who attend. She co-moderates the MitoAction Friday Support
Teleconference, is a member of the Advocacy Task Force, a support person within
Mito 411 and volunteers at the annual MitoAction energy walk in Boston. She has testified at a hearing to promote MA
House Bill 941, “An Act for Providing Care and Treatment for Persons with
Mitochondrial Disease”, and continues to promote legislation for this essential
bill. Julie is also a Working Group
Member of the Nutritional Interventions in Primary Mitochondrial Disorders
(NIPMD) which is a collaboration between NIH (National Institute of Health),
ODS (Office of Dietary Supplements) and stakeholders focusing on nutritional
interventions in primary mitochondrial disease.
MaryBeth Hollinger RN, MSN- is the coordinator of the Mito 411 line,
co-moderates the weekly teleconferenced Mito support group, and is a member of the
MitoAction Advocacy Task Force, offering support, information and advocacy to
families in need. MaryBeth has a strong
desire to assist families facing medical child abuse charges, developing a plan
of action for these families. These families are strong, yet can be so lost and
vulnerable. MaryBeth earned her BSN at
Boston College and earned a dual MSN in nursing education and pediatric
clinical nurse specialist. MaryBeth worked at Albany Medical Center’s NICU as
the research coordinator, earning both institution and NYS Regional Nurse of
Distinction Honors. Volunteerism is a cornerstone to MaryBeth’s life. She is active
with Therapy Dogs International, taking her dog to schools, libraries, and
Albany Medical Center’s pediatric units on a weekly basis. She has helped to
develop, manage, and coach many youth sports and music leagues, including
soccer, basketball, running, and orchestras. MaryBeth lives in upstate New York
with her supportive husband and four children. As MaryBeth’s life has also been
touched by mitochondrial disease, she has devoted her time and energy to helping
others navigate this complex, misunderstood disease through education and
EXPLORING the RESOURCES AVAILABLE for EDUCATION, ADVOCACY and SUPPORT:
Mark Korson MD
Mark Korson graduated from the University Of Toronto School Of
Medicine and completed his pediatric residency nearby at The Hospital for Sick
Children. He came to Boston to do a fellowship in genetics and metabolism
at Children's Hospital. Following that, he directed the Metabolism Clinic
at Children's until 2000, transferring then to Tufts Medical Center's Floating
Hospital for Children where he remained the Director of the Metabolism Service
and an Associate Professor of Pediatrics at Tufts University School of Medicine
Dr. Korson promotes an educational approach to
address the growing crisis in metabolic health care due to the shortage of
clinicians available to treat this community. Between 2007 and 2011, Dr.
Korson directed the Metabolic Outreach Service, for which he
traveled on a regular basis to five teaching hospitals in the Northeastern US
where there is no on-site metabolic service. The goal was to provide
educational and consultative support so that non-metabolic clinicians could
learn how to participate more in the diagnosis and management of patients with
metabolic disease. That same year, Dr. Korson also co-founded the North
American Metabolic Academy, an annual one-week intensive course about
metabolic disease for genetic and metabolic trainees; to date, more than half
of all American genetic trainees have enrolled in this course. NAMA is
sponsored by the Society for Inherited Metabolic Disorders.
In 2015, Dr. Korson co-founded the Genetic
Metabolic Center for Education, a comprehensive, multi-modal approach
for improving the level of care for children and adults with metabolic
disease. The components of the GMCE include a consultation and clinical
support service, subspecialty-specific conferences, an interactive
training/reference web site, a live patient speaker program and library of
patient presentations, and development of symptom-based, practical brochures
for distribution to clinicians.
Cheryl Clow RN CDE- Cheryl is currently working as the RN
in the Section of Genetics and Metabolism.
She began her career 23 years ago with AMC working for the department of
pediatric endocrinology, where inborn errors of metabolism and the new born
screening program were 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 the newborns with
metabolic disorders and working with the mitochondrial disorders population. She was the 2013 Albany Medical Center
employee of the year and has received numerous local as well as national
recognition for her compassionate care. She
is often confused with Julia Roberts.
GETTING THROUGH THE DAY WITH MITO:
Mr. Charles Mohan Jr. CEO, Executive Director UMDF – Mr. Mohan is the founder of the United Mitochondrial Disease
Foundation. The UMDF initially began in
the basement of Mr. Mohan’s home in 1996 and has grown to a national operation
providing HOPE, EVERGY and LIFE to thousands of people affected by mitochondrial
disease. Mr. Mohan served as Chairman of
the Board of Trustees and has chaired both the executive committees and human
resource committee. In July 2006, Mr. Mohan
was hired as UMDF’s Chief Executive Director, where he remains the driving
force behind the foundation, helping many families cope with the crisis of
mitochondrial disease. Mr. Mohan owns a
restaurant in Pittsburgh and has been in the restaurant business since
1963. He also taught at Plum High School
from 1972-1979 and has served as councilman for his local municipality. Chuck and his wife, Adrienne, lost their 15
year old daughter, Gina, to mitochondrial disease in 1995.
COLLABORATION TOWARDS A CURE:
Kayt Marra MA CD-N, CCRP - Albany
Medical Center Genetics and Metabolism Dept. Kayt
completed her undergraduate degree in nutrition and a Master of Arts in Health
Policy at Empire State College. She is
a Certified Dietitian- Nutritionist in New York State and is also a Certified
Clinical Research Professional. She has
worked at Albany Medical Center for more than 25 years. Kayt is passionate about patient advocacy and
creating novel education programs to assist patients in developing the skills
necessary to manage chronic disease and become good advocates for
themselves. Her additional professional
interests include research and grant writing.
She is an active volunteer for a number of health related and church
sponsored organizations. Kayt is a
lifelong resident of the capital region.
Kayt and her husband, Mike, are empty nesters who enjoy regular visits
to Colorado as well as local sites of historic interest. When she is sitting still it is with a good
book or the latest knitting project and her greyhound Max.
THANKS TO EVERYONE WHO HELPED MAKE MITO HOPE and HELP'S 2015 SYMPOSIUM A SUCCESS!