Dejerine-Sottas

Subscribe

Enter your email address and select the appropriate button below to receive email notifications of updates to this site, or remove yourself from the list.



Subscribe
Unsubscribe
Join the Dejerine-Sottas message board and connect with others affected by Dejerine-Sottas!

Poll

Do you experience neuropathic pain from Dejerine-Sottas?

 Yes, often
 Yes, occasionally
 No


View results

We won! Stem Cell Bill Passed the House: A Message from the Christopher Reeve Action Network

May 26, 2005

Filed under: Action Alerts

We did it. In a landmark vote that gives hope to millions of patients throughout the nation, the U.S. House of Representatives passed a bill to expand the federal stem cell policy–a highly restrictive policy announced by President Bush in August 2001. The Stem Cell Research Enhancement Act (H.R. 810) passed 238-194.
Your efforts made the difference! Many Representatives commented on how their offices were flooded with calls and letters overwhelmingly supportive of the bill. All we can say is thank you for your time and effort.
With this victory, we’re now changing our focus to the Senate, where support for the bill is bipartisan and strong. We’re confident that The Stem Cell Research Enhancement Act (S.471) has a great shot at passing, but we’ll definitely need your help in building on today’s momentum for this bill to become law.
But for today, let’s celebrate our victory and thank our friends. Please send a letter thanking the cosponsors of this legislation, Representatives Michael Castle (R-DE) and Diana DeGette (D-CO), and all our champions in Congress for their great leadership in this historic vote. See if your Member voted for the bill and send a thank you letter for their support. We are grateful to all the Members of the House who heard the concerns of the people and voted to support this historic legislation. Their actions will help move this vital research forward and provide hope to millions of Americans.

Site helps uninsured find health coverage

May 25, 2005

Filed under: News You Can Use

Condensed from The Arizona Republic:
The National Association of Health Underwriters has rolled out an Internet site that provides state-by-state information on coverage options for many situations – including job changers, high-risk people unable to obtain traditional insurance and the poor.
The new site, www.nahu.org/consumer/healthcare, is helpful to a computer savvy consumer who understands insurance terms. That’s especially the case if it is used in conjunction with other Internet sites that provide price quotes on individual policies and the consumer health insurance information.
Every three years an average of one in four adults loses employer-based health coverage – at least temporarily – because of a job change, an employer’s bankruptcy or another life event such as early retirement or a divorce, according to Georgetown University’s Health Policy Institute.
For people with pre-existing health problems, the new Web site lists the 32 states that have high-risk pools…. and a state-by-state list of health programs for the poor such as Medicaid and the federally subsidized State Children’s Health Insurance Program.

Just Announced! Stem Cell Vote on Tuesday: A Message from the Christopher Reeve Action Network

May 21, 2005

Filed under: Action Alerts

It was just announced this afternoon – The House of Representatives will vote on the Stem Cell Research Enhancement Act on TUESDAY, MAY 24th.
We’ve been waiting for nearly four years for this opportunity. Through your hard work, we have 201 co-sponsors as of today, and we’re planning an all-out last minute push to get us to a majority in the House (218 votes)
On Monday, we’re going to do a National Call-in Day to urge Congress to vote YES on H.R. 810, The Stem Cell Research Enhancement Act – expanding the federal embryonic stem cell policy and offering hope to over 128 million Americans.
Even those Members of Congress who already have indicated their support need to hear from you in support of H.R. 810 so they know that it’s an important issue in their district. These calls will make the critical difference!
We’ve come so far, and we can win this! Please mark your calendars and set aside a few minutes on Monday to make the call.

(more…)

Scientists get the lab laugh with amusing gene names

May 16, 2005

Filed under: Genetics

Though not especially informative about the sonic hedgehog gene, this article gives some interesting and amusing insights into the process of naming genes.

Sonic hedgehog makes a protein that sculpts human embryos’ nervous system, limbs and organs. Later in life, it can activate hair growth and contribute to several types of cancer. It’s hugely interesting to stem cell scientists and oncologists.
But the Norwegian scientist who discovered sonic hedgehog 12 years ago now regrets that it’s named after a SEGA video game. He allowed his American collaborators to talk him into adding sonic to the name. The hedgehog part had been decided years before by the irreverent fruit fly scientists.

Monkeys adapt robot arm as their own

May 11, 2005

Filed under: Neuroprosthetics

From Medical News Today: Monkeys that learn to use their brain signals to control a robotic arm are not just learning to manipulate an external device, Duke University Medical Center neurobiologists have found. Rather, their brain structures are adapting to treat the arm as if it were their own appendage.
The finding has profound implications both for understanding the extraordinary adaptability of the primate brain and for the potential clinical success of brain-operated devices to give the handicapped the ability to control their environment, said the researchers.

(more…)

House of Representatives to Vote on Expanding the President’s Stem Cell Policy by the Memorial Day Recess: A Message from the Christopher Reeve Action Network

Filed under: Action Alerts

We’re pulling out all the stops. We’ve been working for almost four years to get a vote in the Congress. And this is our chance. The House Republican leadership has agreed to allow a floor vote on The Stem Cell Research Enhancement Act, H.R. 810.
The Stem Cell Research Enhancemement Act, H.R. 810, is a bi-partisan bill sponsored by Representatives Mike Castle (R-DE) and Diana DeGette (D-CO) that will expand Federal research funding to the use of embryonic stem cells derived after August 9, 2001.
What does this bill do? Fundamentally, it removes the arbitrary date of August 9, 2001 from the current federal funding regulations. The bill would allow embryonic stem cell lines derived from unused, donated embryos from in-vitro fertilization that would otherwise be discarded to be eligible for federal funding. All of the current regulations and oversight put in place by President Bush would remain intact.
With both Democrats and Republicans working to support this bill, we already have 198 co-sponsors, and have additional verbal pledges from Members to vote for the bill. We need 218 votes to win.
We have every reason to think the floor vote will be extremely close. With your help, we can win this vote. Contact your Member of Congress and urge a YES vote on Castle-DeGette, H.R. 810.

(more…)

Mosaic Mouse Technique Offers A Powerful New Tool To Study Diseases And Genetics

May 7, 2005

Filed under: Understanding the Cause

From Science Daily:
A powerful laboratory technique used by fruit fly geneticists for more than a decade is now available to scientists studying genes and diseases in mice.
Writing in the May 6 edition of the journal Cell, researchers from Stanford University describe a streamlined method for creating a “genetic mosaic mouse”–a rodent whose body is genetically engineered to produce small clusters of cells with mutated genes.
The new technique, called Mosaic Analysis with Double Markers (MADM), was developed in the laboratory of Liqun Luo, professor of biological sciences at Stanford who was recently named an investigator with the Howard Hughes Medical Institute.
“With MADM, you can look at a tiny subset of cells and study gene function at a very high resolution,” says Luo, who also is affiliated with the Neuroscience Institute at the Stanford School of Medicine. “Our method can be used to study a variety of tissues, such as the skin, heart and nervous system.”
Mosaics are designed to give researchers an opportunity to observe what happens when a specific gene is removed from a small cluster of cells in a living animal. With MADM, cells carrying an altered gene of interest actually turn green for easier observation.

(more…)

Call and Say Thanks!: A Message from the Christopher Reeve Action Network

May 5, 2005

Filed under: Action Alerts

There are currently 197 co-sponsors of The Stem Cell Research Enhancement Act. Click here to see if your Member of Congress is a co-sponsor, if they are, please thank them. We are only 20 co-sponsors away from a majority and want to ensure our champions are hearing from us.

(more…)

Message from HNF

Filed under: Fundraising

The Hereditary Neuropathy Foundation would like everyone to know that you can support Charcot-Marie-Tooth research by doing your Mother’s Day shopping at iGive. Up to 30% of each purchase you make from hundreds of participating online stores goes to your favorite worthy cause.