What's New?
This is what may have changed
since your last visit to this website.....
Click here to go back to the MTM Resource Group home page.
29 September 2006
- Help with updating this
website and initiating other current projects (2006 and beyond) on myotubular
myopathy and centronuclear myopathy (MTM/CNM) is now provided by: The Foye Family, 38 Buckingham Circle, Pine
Brook, New Jersey, USA, 07058-9506. Phone number: 973-882-1996. E-mail: myopathy@optonline.net or you can click
on this link to send an e-mail to the
Foye Family to communicate with them about the latest MTM/CNM
developments, or any other questions or comments that you may have.
We actively encourage other affected families to contact us with
any questions about MTM/CNM, or to share your story, or to network, or for
support, or share ideas about ways to help affected individuals and families.
Only by families working together can we help make a difference for people
with myopathy worldwide. Or just email us to say "Hi!" We would
LOVE to hear from you! Just click
on this link to send an e-mail to us.
No matter where in the world you are reading this from, contacting
us right now is just a click away.
- Acknowledgment to Scoggin Family: The Foye’s are honored to be able to assist the
Scoggin Family in updating this fantastic website. Pam and Gary Scoggin and their website have been,
and they certainly continue to be, a source of hope, inspiration and
information for MTM/CNM families worldwide. They started a website on MTM
before many of us even knew what a website was. For countless families,
the Scoggin’s MTMRG website provided the first
glimmer of hope after the families learned that their children were
diagnosed with MTM. At a time when almost all the medical literature
contained old and outdated information erroneously indicating that essentially
all MTM children would die within the first year or so of
life, Pam and Gary openly shared the family stories that showed that the
universally poor prognosis in the old medical books was no longer
universally true. Pam and Gary were largely responsible for networking
with MTM1 families in the 1990s, resulting in significant advancements in
the medical literature regarding the understanding of these myopathies.
Their efforts contributed substantially to the publications by geneticist
Gail Herman, PhD, back when she was working on MTM research (e.g.,
reporting the variety of medical conditions seen in children with MTM).
Thus, Pam and Gary are an inspiration to us all to support both MTM/CNM
families and MTM/CNM researchers. All of this they did while
simultaneously facing the demands of raising a son with MTM. While Pam and
Gary are modest, down-to-earth folks not seeking personal acknowledgment
for their efforts, we (and so many in the MTM/CNM community) are well
aware that they have made, and they continue to make, a substantial
positive difference in the world. Pam and Gary have been "carrying
the torch" for MTM/CNM families for many years and they continue to
do so. They continue to run the MTMRG from Texas. Meanwhile, the Foye’s
are honored to be able to provide some small assistance with updating this
website and answering emails (myopathy@optonline.net).
- We are happy to report that Pam and Gary’s son John is now
17 years old and is a senior in high school!
05 August 2001
- First of all, our apologies in getting behind in email and in updating this web page. It has been a very wild summer for us as you can tell if you read the latest update to our family's story. Hopefully, most of this is over and we can start spending more time on the website and your email.
- Added the Barker and Steckler family stories.
11 March 2001
- Added link to Abrams Family.
10 March 2001
- Gave up on correcting the hit counter on the home page. Added the line noting hits through last week.
- Minor editorial corrections
- Mention of a grant from BP Global Social Investment in Tips, News and Snippets and About the Resource Group pages.
9 March 2001
- Added Link to MDA of Southwest and Central Virginia, courtesy of Pat & Roger Schulz.
- Added "A Word about E-Mail" to the Contact Us page. Eliminated the reference to the Guestbook until I can get one going.
- Corrected the hit counter on the home page. (I inadvertently reset it with an upload about a week earlier. I reset the counter to 5570 which was the number of hits prior to the update plus the number of hits shown at the time of this correction.)
23 December 2000
- An article in the MDA Magazine Quest tells the story of the Resource Group and of some of the research that is underway. Click here to go to the article.
24 November 2000
- Added Feldscher Family Story.
- Added link to photos of affected muscle cells to Information
- Minor editorial corrections.
28 October 2000
- University of Chicago now has carrier testing available for MTM1 (the x-linked version). Added this to the FAQs.
07 October 2000
A long overdue set of revisions. Sorry it's been so long, but trust us we've been busy.
22 Apil, 2000
- Added Myotubular Myopathy Article by Candice Roman to Information page. A very well done article that's worth your time to read!
16 April, 2000
- Added section on Information That We Need.
15 April, 2000
- Added section on Statistics.
3 April, 2000
- Added Privacy Policy
- Added reference to Josua Frase Foundation to Research.
- Added mention of Joshua Frase Foundation mailing to Tips, News and Snippets.
20 February, 2000
- Editorial corrections.
- Updated Scoggin family story.
- Repaired Navigation page
03 February, 2000
- Added link to poem from Supelo Family.
28 January, 2000
- Moved site to Verio making some editorial corrections along the way. During the period the site was unavailable for a few days. We regret any inconvenience this may have caused.
- Added Robert Family story.
02 January 2000
- Added article on TES to Managing MTM.
- Added discussion of Pulmonetics LTV-100 to Tips, News and Snippets.
- Added link to Vent Users Digest to Internet Sources.
26 December 1999
Added mention of BP Amoco Foundation to Tips, News and Snippets and About the Resource Group pages.
20 November 1999
15 October 1999
- Added link to Dynamic Orthotics to Internet Sources
- Minor editorial corrections
26 September 1999
- Added article on bone marrow transplants as a treatment for muscular dystrophy to Tips, News & Snippets.
06 September 1999
- Added September 1999 newsletter.
- Overhauled Contact Us page.
- Added Family Registration page.
- Updated Scoggin family story.
- Minor editorial corrections.
10 July 1999
- Added information on Spherocytosis and Peliosis of the Liver to the Managing MTM page. Peliosis has been positively linked to XMTM and has caused the deaths of several children. This is important information.
- Added definition of Peliosis Hepatitis to the Glossary.
- Minor editorial corrections.
5 July 1999
- Added link to MetDESK to Internet Sources
26 April 1999
- Revised FAQs
- Added more Grant Family pictures
- Minor editorial corrections
20 March 1999
- Edited and added additional information to Abstract of February 1999 Journal of Pediatrics Article.
- Added Johnson family story.
- Expanded section on respiartory care and added photos of negative pressure chamber to Managing MTM.
- Added photos to Grant family story.
14 March 1999
Added link to MDA Quest Article on co-Q10 and Carnitine to Tips, News and Snippets.
04 March 1999
Added story about Supreme Court requiring school districts to pay nursing costs for medically fragile students to Tips, News and Snippets. This is an important story for many families.
03 March 1999
Added Villon family story.
27 February 1999
- Added summary of ENMC conference on MTM Research. This summary is about a year old but it provides good information so we thought it should be included.
- Fixed the long-broken link to Dr. Carina Wallgren-Petterson's internet article on MTM.
- Made a few minor housekeeping changes to the site.
26 February 1999
This one is important, folks!
An exciting new article has just been published in the Journal of Pediatrics. This article, written by Dr. Gail Herman and several other researchers (including our old friend, Dr. Aida Metzenberg) gives updated information on outcomes of patients with x-linked MTM. Also, very importantly, this article describes many of the associated medical problems that appear to accompany XMTM. This article is summarized on the Research page; we have also included a copy of the article's abstract.
24 February 1999
The website was completely overhauled, reformatted and expanded. Much of the content has been changed or expanded. Some outdated stuff was eliminated. We did this makeover in order to give the site a cleaner and more consistent look and to make navigation a little easier.
Revisions to the former version of this website....
31 January 1999
- Added Grant family pictures.
24 January 1999
- Minor revisions and corrections.
22 January 1999
- Added picture of John to the Scoggin Family Story.
- Added acknowledgement to Amoco Foundation.
16 January 1999
- Fixed linking problem with homepage.
2 January 1999
- Added story of Berlinquette Familiy.
23 December 1998
- Added story of Hughes Family.
19 September 1998
- Added story of Beasley Family.
- Updated story of Scoggin family.
- Rearranged topics and added topic on undescended testicles.
04 September 1998
- Added Sasha's Story.
- Added link and tribute to our friends at the IAFF.
- Added Interviews with Gail Herman to the Research Page. These interviews were already linked through the newsletters but linking them here, as well, should make them easier to find.
28 August 1998
- Added Navigation Map to Home Page
22 August 1998