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























October 30, 
2015 Troy Hilton Garden Inn 
































WELCOME:



Catherine LaFond-Evans, founder of MITO HOPE and HELP.   

It is my sincere pleasure to welcome you to MITO HOPE and HELP’s 4 Annual Mitochondrial Disease Symposium. 


Today’s symposium is jointly sponsored by Albany Medical College.  
Before we start, I would like to acknowledge and thank a few other key individuals and organizations who have also helped make today’s symposium possible.
OUR SUPPORTERS:
The Thomas Patrick Morrison Foundation,
MitoAction
The United Mitochondrial Disease Foundation
Vitaflo USA, LLC
Double H Ranch
Amanda’s Journey Foundation
The New York State Rare Disease Alliance
The Oley Foundation
Nfrastructure
Solace Nutrition
And our parent organization; Warren, Washington and Albany Counties Chapters of New York State ARC.

MITO HOPE 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.
This year, 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 relentless disease.
All of our children have or had different forms of mitochondrial disease. 
Our precious 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.
I couldn’t be happier with how our MITO Communities grass root efforts have taken hold, grown stronger and deeper, and are now intertwined.  

Despite the 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 families.

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.
My family and I have been dealing with mitochondrial disease for 32 years now and enough is enough! 

All MITO 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 disease. 
Let’s turn the page and start a new chapter! 
We must! 

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. 

Unfortunately, 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 our efforts. 

Currently, 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. 

Everyone involved knows what is needed in order to turn this tide:
Adequate funding…… 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. 

The injustices 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 WILL BE….

When ALL 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!

Until the 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!  

TOGETHER…. 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 advocacy efforts.                                                                                                                                                          
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 until 2014.
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.



THE POWER OF EDUCATION:




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:
CCMITO (2).pptx (PPTX — 2 MB)





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!