Mitochondrial Disease conference in Akron, OH - Fri Oct 13 & Sat Oct 14

[BeautifulDay]

The UMDF (United Mitochondrial Disease Foundation) Northeast Regional Symposium will be next Friday and Saturday. Friday is for CPE for doctors, researchers, nurses .... Saturday is for family members.
https://www.umdf.org/event/umdf-northeast-regional-symposium/

Schedules below. Private message me if you are going. I'd love to meet others from PR.

Clinical Session Schedule
Friday, October 13, 2017
7:00 am-8:00 am Continental Breakfast and Registration Sign-in
7:45 am-8:00 am Welcome
Bruce H. Cohen, MD, Course Chair
8:00 am- 9:00 am Akron Children’s Hospital Grand Rounds – Mitochondria and Autism –The Story of a New Discovery and its Journey from the Bedside, to the Bench, and back to the Bedside
Robert K. Naviaux, MD, PhD
9:15 am- 10:15 am Mitochondrial Disease Primer
Amy Goldstein, MD
10:15 am- 10:30 am Break
10:30 am-11:30 am Screening and Evaluation of Mitochondrial Disorders
Sumit Parikh, MD
11:30 am – 12:30 pm Current Treatments and Therapies
Amel Karaa, MD
12:30 pm Lunch
1:30 pm – 2:00 pm Exercise Testing in Mitochondrial Disorder – Unmasking the Defect
Rajeev Bhatia, MD
2:00 pm – 2:30 pm Special Topic – Diagnostic Approaches and Genetic Etiologies for Pyruvate Dehydrogenase Complex (PDC) Deficiency with Implications for Clinical Management and Therapeutic Interventions
Jirair K. Bedoyan, MD, PhD
2:30 pm – 3:00 pm Special Topic – What is the State of Functional Mitochondrial Testing…
Charles Hoppel, MD
3:00 pm – 3:30 pm Break
3:30 pm – 4:30 pm Clinical Trials and Clinical Trial Results
Bruce Cohen, MD
4:30 pm – 5:00 pm Mitochondrial Medicine Society and Practice Patterns and the UMDF Roadmap
Sumit Parikh, MD and Amy Goldstein, MD
5:00 pm – 5:10 p.m. Closing and Adjournment

Family/Patient Session Schedule
Saturday, October 14, 2017
8:30 am-10:00 am Continental Breakfast, Networking Time, and Registration Sign-in
10:00am-10:30am Welcome and Introductions
10:30am-11:30am Mitochondrial Disease: What is It and What to Expect?
Amy Goldstein, MD
11:30am-11:45am Break
11:45am-12:15pm Screening and Evaluation in Mitochondrial Disorders
Sumit Parikh, MD
12:30 p.m. – 2:00 p.m. Box Lunch with Question and Answers – All speakers and local mitochondrial specialists
2:00pm-3:00pm Current Therapies in the Treatment of Mitochondrial Diseases
Amel Karaa, MD and Bruce Cohen, MD
3:00pm-4:00pm UMDF Closing and Networking Time
4:00pm Adjourn

 

[Valentijn]

1:30 pm – 2:00 pm Exercise Testing in Mitochondrial Disorder – Unmasking the Defect
Rajeev Bhatia, MD

That one could be interesting, in the context of a possible relationship to ME.

 

[BeautifulDay]

That one could be interesting, in the context of a possible relationship to ME.

It's wonderful to see that some doctors are taking the exercise testing, dyspnea, etc.... seriously. When I was in high school, I was told I had exercise induced asthma and here is an inhaler (that never helped). There was never any further testing.

I just looked up the speaker for that one -- Exercise Testing in Mitochondrial Disorder – Unmasking the Defect
Rajeev Bhatia, MD

His profile page on Akron's Children's Hospital's website is interesting:
Pediatric Pulmonologist
Medical Director, Clinical Exercise Physiology Lab
Department: Pulmonary Medicine

Research Interests
Pediatric Cardiopulmonary Exercise Testing
Exercise intolerance in Mitochondrial Myopathy
Exercise Induced Dyspnea
Exercise induced bronchoconstriction
Pulmonary Function Testing

Associations
American Academy of Pediatrics
Ohio AAP Home and School Health Committee
American Thoracic Society (ATS)
American Academy of Sleep Medicine
American Medical Association

Clinical Interests
Pediatric Cardiopulmonary Exercise Testing
Exercise Induced Dyspnea
Pulmonary Function Testing

 

[Valentijn]

When I was in high school, I was told I had exercise induced asthma and here is an inhaler (that never helped). There was never any further testing.

I got the same diagnosis in law school, 5 years prior to ME onset. Corticosteroids made it worse, but Intal (Cromolyn Sodium) helpeda bit. Though it went away after a while.

 

[voner]

here's a poster of some exercise intolerance work that Dr Bhatia did... if you go to the bottom of this page you can download the poster. The Direct research gate link to the poster was so long I thought it would be best to post this page. perhaps, somebody else can find this poster in a shorter link.

https://www.researchgate.net/public...dren_and_adults_with_mitochondrial_myopathies

Single day peak vo2 testing.

 

[BeautifulDay]

I got the same diagnosis in law school, 5 years prior to ME onset. Corticosteroids made it worse, but Intal (Cromolyn Sodium) helpeda bit. Though it went away after a while.

It's very interesting how some of our symptoms and the course those symptoms took were very similar.

 

[BeautifulDay]

here's a poster of some exercise intolerance work that Dr Bhatia did... if you go to the bottom of this page you can download the poster. The Direct research gate link to the poster was so long I thought it would be best to post this page. perhaps, somebody else can find this poster in a shorter link.

https://www.researchgate.net/public...dren_and_adults_with_mitochondrial_myopathies

Single day peak vo2 testing.

Thanks @voner

My daughter is coming home from college soon to see her pulmonologist. I just printed out that poster to take with us to the appointment.

 

[pattismith]

Nice to see that Naviaux is speaking here!

 

[Isaiah 58:11]

When I was in high school, I was told I had exercise induced asthma and here is an inhaler (that never helped). There was never any further testing.

I got the same diagnosis in law school, 5 years prior to ME onset. Corticosteroids made it worse, but Intal (Cromolyn Sodium) helpeda bit. Though it went away after a while.

Same here. I was diagnosed around 13, 5 or 6 years before onset.

 

[BeautifulDay]

Mitichondrial Disease Conference just finished. I asked Dr. Robert K. Naviaux the questions people were asking in another thread -- from the relation of autism to mitochondria and CFS, and also what he needs at the moment, etc.... I asked the entire medical team the question about CFS and mito. Great conference I learned a lot. I fly out tomorrow and I'll post what I learned when I'm home on my computer.

In the meantime I just ordered a beer at O' Charley's. Having dinner at bar. Otherwise a 30 minute wait. This is what goes for a single serving beer in Ohio. See picture. LOL.

Good thing my hotel is nearby.

 

[Creachur]

The UMDF (United Mitochondrial Disease Foundation) Northeast Regional Symposium will be next Friday and Saturday. Friday is for CPE for doctors, researchers, nurses .... Saturday is for family members.
https://www.umdf.org/event/umdf-northeast-regional-symposium/

I saw names like Cohen, Naviaux and Parikh amongst the speakers and you don't get more authoritative speakers than that when it comes to mitochondrial disease.

Did any conference papers get produced for non-attendees to see what was said?

 

[Awags1986]

Mitichondrial Disease Conference just finished. I asked Dr. Robert K. Naviaux the questions people were asking in another thread -- from the relation of autism to mitochondria and CFS, and also what he needs at the moment, etc.... I asked the entire medical team the question about CFS and mito. Great conference I learned a lot. I fly out tomorrow and I'll post what I learned when I'm home on my computer.

In the meantime I just ordered a beer at O' Charley's. Having dinner at bar. Otherwise a 30 minute wait. This is what goes for a single serving beer in Ohio. See picture. LOL. View attachment 24646 Good thing my hotel is nearby.

I live about an hour from Akron! Maybe we can conference together next year

 

[BeautifulDay]

I saw names like Cohen, Naviaux and Parikh amongst the speakers and you don't get more authoritative speakers than that when it comes to mitochondrial disease.

Did any conference papers get produced for non-attendees to see what was said?

There were no handouts at this conference. Purely the speakers and their slides.