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Tips, News & Snippets
Little pieces of data that we didn't have another place for.

Grant from BP

The resource group recieved another $500 grant from BP Global Social Investment, part of the BP Group in support of our activities.

(10 March 2000)

Privacy Policy

Although we've been protective of your privacy all along, we have formalized a new privacy policy for the organization and for the website.

(31 April 2000)

Joshua Frase Foundation Mailing

At the request of Alison and Paul Frase and the Joshua Frase Foundation, we have forwarded a mailing to many of you who have registered with our website in the last year.   As we are protective of the privacy of those of  you who register with this site, rather than release your names to the foundation, we have addressed the envelopes ourselves and mailed them on.

(31 April 2000)

Pulmonetics LTV-100 Ventilator

There has been a lot of interest expressed lately in the LTV-100 Ventilator from Pulmonetics. It is small, lightweight and represents a leap in technology from the PLV-102 and a couple of leaps in technology from the LP-10.   We evaluated one of these a few months ago and they do seem promising.  The drawback we discovered was the noise.  The on-board flow generator ( a small, high speed compressor, presumably) makes a noticable and incessant whining sound.  It was too much for us but individual tastes may vary.  Since our son is only partially vent dependent and doesn't need one for daily activities, the bigger, quiter PLV-102 suits us fine.  But for portability, the LTV-100 is by far the best we've ever seen. -- GMS

(02 January 2000)

Resource Group receives BP Amoco Foundation Grant

The resource group received a grant from the BP Amoco Foundation, part of BP Amoco, plc, to help fund our mailings and other expenses.

(26 December 1999)

Bone Marrow cells may fight muscle diseases.

According to a recent article in the journal Nature, bone marrow transplants  could restore stregth to patients with muscular dystrophy and other similar diseases.  Researchers at Children's Hospital in Boston infused mice with muscular dystrophy woth bone marrow cells from healthy mice.  The affected mice then generated healthy muscle cells.

This is important because it opens a new avenue in treating genetically based muscle disorders.  According to the Associated Press, Dr. Leon Charash, chairman of MDA's medical advisory committee called the findings, "exciting".  Dr. Charash went on to say that "The work may eventually lead to an unanticipated treatment approach for all the muscles ravaged by neuromuscular disease."

(An abstract of the article, (Dystrophin expression in the mdx mouse restored by stem cell transplantation by EMANUELA GUSSONI, YUKO SONEOKA, CORINNE D. STRICKLAND,  ELIZABETH A. BUZNEY, MOHAMED K. KHAN, ALAN F. FLINT, LOUIS M. KUNKEL  &  RICHARD  C.  MULLIGAN (Nature 401, 390 - 394 (1999) © Macmillan Publishers Ltd.)) can be found on the Nature website.  First you will need to register and then search using the title or author's name.)

(26 Sept 1999)

More on co-Enzyme Q10 and Carnitine supplements

The March 1999 edition of the MDA magazine Quest has a very informative article about these nutritional supplements.  Click here to view.

(14 March 1999)

Supreme Court Rules Schools Must Pay for Nursing for Disabled Students

The following excerpt is from the New York Times Web Page, 4 March 1999

WASHINGTON -- Students with disabilities who require special care during the school day are entitled to that care at public expense, the Supreme Court ruled on Wednesday, as long as the services can be provided by someone other than a doctor.

The 7-2 decision upheld lower court rulings that required an Iowa school district to provide a trained aide to monitor the needs of a quadriplegic boy who was dependent on a ventilator.

It was a substantial victory for families of children with disabilities, who have become increasingly assertive about their rights under federal law and who in many cases have met resistance from school districts burdened by the mounting costs of special education.

Without someone available at all times, the boy, a bright student who was injured in a childhood accident, would not have been able to attend school. The question was whether the parents had to pay for the full-time aide or whether the school district had that obligation under a federal law, the Individuals with Disabilities Education Act, which guarantees a "free appropriate public education" to students with disabilities. The law provides that in addition to special education, school districts must pay for "related services" but need not pay for "medical services."

In ruling for the family, the Court adhered to its view in a 1984 case that as long as a student's physical needs can be met by someone who is not a doctor, the required services do not fall within the excluded "medical services" category. "A rule that limits the medical services exemption to physician services is unquestionably a reasonable and generally workable interpretation of the statute," Justice John Paul Stevens said in the majority opinion.

The Cedar Rapids Community School District had argued that the question should be not whether a doctor or someone else provided the services, but rather how complex, continuous and expensive the services were, a "multifactor test" requiring a detailed analysis of each case. But "the district's multifactor test is not supported by any recognized source of legal authority," Stevens said. "The district may have legitimate financial concerns, but our role in this dispute is to interpret existing law."

Although the district argued that the cost would be more than $20,000 a year, the majority opinion disputed this, noting that the boy, Garret Frey, was already entitled to an aide who turned pages for him and kept his desk in order. The district could hire an aide who could both perform those tasks and be trained to attend to the ventilator and other physical needs, Stevens said.

Noting that without the services Garret could not stay in school, Stevens said, "This case is about whether meaningful access to the public schools will be assured."

Justice Clarence Thomas filed a dissenting opinion in the case, Cedar Rapids v. Garret F., No. 96-1793, which Justice Anthony M. Kennedy joined. Congress passed the law "to increase the educational opportunities available to disabled children, not to provide medical care for them," they said, adding that the law as interpreted by the Court "blindsides unwary states with fiscal obligations that they could not have anticipated."

The National School Boards Association, which joined the case on the district's side, said in its brief that providing the services would be particularly burdensome to small school districts. The association estimated that 17,000 children would be affected nationwide.

Many kids with MTM require nursing assistance while at school.  Many school districts have resisted this. If this is an issue for you, please let us know and we can provide some insight and some advice on making this happen.

(4 March 1999)

Inteview with Dr. Gail Herman

Another interview with Dr. Herman discussing the latest research and where the research will go from here. From the November 1997 newsletter.

Tax Exempt Status

The resource group today received notification that the IRS has approved our application for tax exempt status under Section 501(c)(3) of the IRS Code.

1/5/98

Pending Developments

There has been more significant progress on locating the gene responsible for x-linked myotubular myopathy. More details as they become available.

3/1/97

More on the Gene

Interview with Dr. Gail Herman about the discovery of a responsible gene and other interesting items. From our August 1996 Newsletter.

(8/24/96)

Researchers Locate a Responsible Gene

Researchers in Europe have located a gene responsible for XMTM. While other genes are also involved, this discovery is an important part of the puzzle.

The research was published in an article entitled,

"A gene mutated in X-linked myotubular myopathy defines a new putative tyrosine phosphatase family conserved in yeast."

The authors are,

• Jocelyn Laporte, Ling Jia Hu, Christine Kretz and Jean-Louis Mandel from the Institut de Genetique et de Biologie Moleculaire et Cellulaire in France.
• Petra Kiochis, Johannes F. Coy, Sabine M. Klauk and Annemarie Poustka from the Abteilung Molekulare Genomanalyse in Germany.
• Niklas Dahl from Department of Clinical Genetics, Uppsala University Children's Hospital, Sweden.

The article was published in Nature Genetics, 13 June 1996.

We will have more about the implications of this research in an upcoming newsletter.

8/10/96

The Resource Group in Exceptional Parent

Our resource group and its formation was recently featured in Exceptional Parent Magazine. See page 12 in the July 1996 Edition.

8/10/96

Spherocytosis

Spherocytosis confirmed in second child. A second child has now been confirmed to have spherocytosis, a form of anemia. If an affected child has higher than expected billirubin, an osmotic fragility test may be indicated.

8/10/96

Elevated Liver Enzymes

We have noticed a trend recently that several affected boys have elevated liver enzymes. This condition has been severe in several cases. If elevated enzymes are noticed in your child or in a child under your care, please contact us as soon as possible. We are collecting this type information for Dr. Herman.

(6/6/96)

Carnitine and Co-Enzyme Q10.

More and more families are using one or both of these nutritional supplements. It has been anecdotally reported in most all of these cases that there is a corresponding increase in energy level. (As always, contact your physician before doing stuff like this.)  

(6/6/96)

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