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

Discussion in 'Upcoming ME/CFS Events' started by BeautifulDay, Oct 7, 2017.

  1. BeautifulDay

    BeautifulDay Senior Member

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    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
     
  2. Valentijn

    Valentijn Senior Member

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

    BeautifulDay Senior Member

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    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
     
  4. Valentijn

    Valentijn Senior Member

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    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.
     
  5. voner

    voner Senior Member

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    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.
     
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  6. BeautifulDay

    BeautifulDay Senior Member

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

    BeautifulDay Senior Member

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    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.
     
  8. pattismith

    pattismith Senior Member

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    Nice to see that Naviaux is speaking here!:thumbsup:
     
    BeautifulDay likes this.
  9. Isaiah 58:11

    Isaiah 58:11

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    A Sun-Scorched Land
    Same here. I was diagnosed around 13, 5 or 6 years before onset.
     
    BeautifulDay likes this.
  10. BeautifulDay

    BeautifulDay Senior Member

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    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. 15080186387831601357331.jpg Good thing my hotel is nearby. ;)
     
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  11. Creachur

    Creachur

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    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?
     
    BeautifulDay likes this.
  12. Awags1986

    Awags1986

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    Ohio
    I live about an hour from Akron! Maybe we can conference together next year ;)
     
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  13. BeautifulDay

    BeautifulDay Senior Member

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

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