Nemaline Myopathy Support Group

Resources

Professional and medical contacts

USA

Having your child diagnosed with nemaline can be a devastating time. It is important to discuss future health and care issues. The following people can help advise you. All names below are given by families who have dealt with the people listed. Please advise me if you find these details out of date.

Nationwide

Disclaimer

The following contact details have been collected from members emails in the nemaline myopathy chat group. It cannot be assured that any of the people are still at the given address.

  • Yellow pages for kids Find health care providers, therapists, etc. for children with disabilities in your state. Drop down list of state. Very comprehensive list. (March 2008)
  • American Sleep Apnea Association (ASAA) We are dedicated to improving the lives of those diagnosed with sleep apnea and to advocate for those who are undiagnosed. (June 2008)
  • American Speech-Language-Hearing Association (ASHA)The American Speech-Language-Hearing Association (ASHA) is the national professional, scientific, and credentialing association for 182,000 members and affiliates. (Aug. 2007)
    Contact your local speech therapy organization for guidance.








Boston

Disclaimer

The following contact details have been collected from members emails in the nemaline myopathy chat group. It cannot be assured that any of the people are still at the given address.

  • Dr. Hartnick, The Mass Eye and Ear Infirmary.
    Dr. Hartnick is incredible, we just saw him for hearing tests. He is the ENT surgeon for my boys. He made a big impact on their lives. (May 2010)
  • Dr. Christopher Hartnick from Mass Eye and Ear Infirmary.
    He is great. Very knowledgable and sympathetic. He also replies to email. (2014)
  • Dr Basil Darras at Children's Hospital, Boston. (Dec. 2013)














Colorado

Disclaimer

The following contact details have been collected from members emails in the nemaline myopathy chat group. It cannot be assured that any of the people are still at the given address.

  • Dr. Michelle Yang is the neuromuscular doctor of Jaxon. He goes to the muscle clinic at Colorado Children's hospital main campus in Aurora. (Dec. 2013)



















Denver

Disclaimer

The following contact details have been collected from members emails in the nemaline myopathy chat group. It cannot be assured that any of the people are still at the given address.

  • Dr. Michelle Yang in the muscle clinic at Colorado Children's hospital main campus in Aurora.
    Our neuromuscular doctor is great!
    Stephanie
    . (Dec. 2013)


















Florida

Disclaimer

The following contact details have been collected from members emails in the nemaline myopathy chat group. It cannot be assured that any of the people are still at the given address.

Illinois

Disclaimer

The following contact details have been collected from members emails in the nemaline myopathy chat group. It cannot be assured that any of the people are still at the given address.

  • Gabriel Aljadeff, M.D. - Pulmonology
    Advocate Medical Group - Lutheran General Hospital
    1675 W. Dempster St. 2nd Floor
    Park Ridge, Il 60068
    847 318-9330
    Has experience with NM and other muscle diseases and kids on bi-level ventilation (BiPAP, VPAP etc); very knowledgeable in his field; most compassionate doctor I ever met; actually listens to and work with parents on different approaches to the child's care. (Dec. 2012)
  • Barbara Klein, MA CCC-SLP
    Speech language pathologist and feeding expert
    also at address above - Lutheran General Hospital in Park Ridge
    Best language-speech and feeding expert in Chicago area; very knowledgeable and creative; also experienced in vitalstim to stimulate feeding muscles in throat (note: I am not sure how much this helped or did not help but we did try it under Barb's recommendation when Kate was 2); sometimes she forgot Kate was only 2 and expected too much in terms of following directions for long sessions but overall she was GREAT.. (Dec. 2012)

Iowa

Disclaimer

The following contact details have been collected from members emails in the nemaline myopathy chat group. It cannot be assured that any of the people are still at the given address.

Louisiana

Disclaimer

The following contact details have been collected from members emails in the nemaline myopathy chat group. It cannot be assured that any of the people are still at the given address.

  • Children's Hospital, New Orleans
    Just the best care anywhere. We had PSA for home health and they were terrific.
    Claire T-K
    (Jan. 2015)


















Maryland

Disclaimer

The following contact details have been collected from members emails in the nemaline myopathy chat group. It cannot be assured that any of the people are still at the given address.

  • GeneDx
    Clinical testing for actin mutations is available now. As you know, NM is caused by at least 6 different genes, and this test would screen for mutations in one of them. Results will be available in approximately 4-6 weeks. Anyone who might be interested in obtaining this test should discuss it with their doctor. The doctor is responsible for ordering the test to GeneDx, just like any routine test is ordered.















Michigan

Disclaimer

The following contact details have been collected from members emails in the nemaline myopathy chat group. It cannot be assured that any of the people are still at the given address.

  • Dr. Helen Devos, CHILDREN'S HOSPITAL in Grand Rapids, Michigan. Intensive feeding clinic.
    We go there and all of Natalie's Drs are there. (June 2014)
  • Liliana goes to University of Michigan Motts Children Hospital for MDA clinic, gastro and Pulmonologist
    University of Michigan Domino Farms; for allergist
    University of Michigan Domino Farms; IHA Primary Pediatric for pediatrican
    Dr. Helen Devos, CHILDREN'S HOSPITAL in Grand Rapids, Michigan. Intensive feeding clinic.
    LeeAnn L.(Jan 2015)

Mississippi

Disclaimer

The following contact details have been collected from members emails in the nemaline myopathy chat group. It cannot be assured that any of the people are still at the given address.

  • Dr. Vada at the Blair E Batson Childrens Hospital in Jackson, MS is who helped us.
    Janet S. (Jan 2015)

Missouri

Disclaimer

The following contact details have been collected from members emails in the nemaline myopathy chat group. It cannot be assured that any of the people are still at the given address.

  • Dr. Pamela Schuler -Pulomonolgist at Shands Hospital - Gainesville
    She is absolutely the best.
    Amy Rhodes
    (Feb 2006)
  • Doctors at Children's Hospital St. Louis at Washington University.
    Did Chelsea's spinal surgery.
    Krystyn Plymell
    (June 2010 & May 2011)

New York

Disclaimer

The following contact details have been collected from members emails in the nemaline myopathy chat group. It cannot be assured that any of the people are still at the given address.

  • Dr. Bach is a leading authority on noninvasive mechanical ventilation. (Sept. 2005)
  • Dr. Andrei Constantinescu - Pulmenologist at Columbia (July 2012)
  • Dr. Maria Santiago is very good.. She is at Cohens/Sneiders childrens hospital
    This is who Philip sees now. She has a few patients with nemaline.
    Joy Bonvino
    (Dec. 2012)
  • Dr. Alfin Vicencio at Mt. Sinai 212 241 5846
    So, I finally found a NYC pediatric pulmonologist who is friendly, humble, clinically excellent, and am really happy that I don't have to travel 2 hours to see him. If you're looking for a new doc, I highly recommend him. He's just moved from LIJ, he is incredibly approachable. We had an emergency last week, and had to race to the ED. He agreed to meet us there and did an emergency bronchoscopy. We followed up today and were really happy.
    Malka
  • If you are close to NYC, try Dr. Scott Rickert at NYU. He won't push any extra procedures or medications, has an excellent bedside manner, and is very smart.
    On a personal level, he's a genuinely nice person.
  • Lianne de Serese at Maria Farrari, forgive the spelling, in Westchester.
    Joseph Haddad at Columbia whose excellent as well.
    Lianne is great.
    Joseph is excellent too.
    Joy
































Plant a tree for NMSG

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Purchase a tree to dedicate to anyone with NM and help us raise funds for our next convention.

Planting a tree is a great way to mark an occasion or to remember a loved one. I am offering people the opportunity to plant a tree in celebration of a family member or friend with nemaline myopathy and at the same time raise funds for the Nemaline Myopathy Support Group.
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