Poetry Hut Blog

For those of you on Facebook, would you mind voting for Ehlers Danlos Network Cares in the Chase Community Giving? That organization has very low overhead, and has worked hard to make it the current Round 2 (Top 100) of the giveaway. And earned $25,000 thus far.

They are trying to raise money for Ehlers Danlos syndrome (EDS) research via funding a mouse model for EDS type IV (Vascular), which is the type that greatly affects life expectancy.

There are 2 steps to the process:

First, become a fan of Chase Community Giving here

Once “become a fan” you are given 5 votes. This is the charity I am requesting that you vote for. And you have 4 votes left over to vote for 4 others.

Thank you very much.

(Crossposted to my afflictions blog)

More, from Ehlers-Danlos Network Cares:

The Issue

Our HOPE is that this research will succeed so that people will no longer suffer or die from EDS; that an accurate EDS research model will be completed in 2010; that in 2 years, medication treatment trials, much like current Marfan trials, will begin, and by 2014, we will implement a revolutionary new treatment for vascular EDS. We HOPE that new spinoff research will uncover effective treatments for all types of EDS, and open doors for funding other sources of long-term research. We will consequently reach over 200,000 in the medical community who will benefit from new evidenced based publications to effectively recognize and manage EDS patients, optimize successful surgical outcomes, and improve the quality of life for the EDS community. These programs, as well as our pediatric initiatives, will be completed by 2011. In order to accomplish our long term mission and ensure our future, endowments will be established. Our job is to bring these goals to fruition. Lives are depending on it!

Dorothy Jean Zimba 1931-2009 BENNINGTON On Oct. 28, 2009, Dorothy Jean Zimba, of North Bennington, died in her sleep of natural causes. She was 77 years old. Dorothy was born in Chattanooga, Tenn. in 1931. In her first marriage, to Ray Bailey of Chattanooga, she had two sons. Later she married Richard Zimba of Dearborn Heights, Mich.; the couple had three children together and remained happily married until the end of Dorothy’s life. For decades, husband and wife worked alongside one another in the family business, Rip’s Drive-In, a suburban Detroit landmark during its time. A gifted storyteller with a lively laugh, Dorothy was admired for her outgoing personality and incisive intelligence. She was a crossword prodigy and a formidable opponent in card games of all kinds. Her hobbies included needlework, gardening, collecting antiques, and painting landscapes and still lifes. Dorothy’s health began to decline in 2007, and at that time she relocated from Michigan to Vermont with her husband. Dorothy will be lovingly remembered by her husband, Richard; by her five children, David Bailey of Issaquah, Wash., Wayne Bailey of Southgate, Mich., Intissar Greene of Mesa, Ariz., Jilly Dybka of Kingston Springs, Tenn., and Dr. Jason Zimba of Pownal; by her five grandchildren, Sgt. Erik Bailey of Camp Liberty, Iraq, Robert Bailey of Monroe, Mich., Jonathan Bailey of Issaquah, Wash., Abigail Zimba of Pownal, and Claire Elizabeth-Jean Zimba of Pownal; by her two great-grandchildren, Madalyn Bailey of Monroe, Mich., and Joanna Bailey of Monroe, Mich.; by her sister, Patsy Ramsey of Ringold, Ga.; by her two nephews, Chris Ramsey of Tampa, Fla., and Barry Ramsey of Ringold, Ga.; by her grandniece, Valerie Ramsey of Tampa, Fla.; by her great-grandniece, Caitlyn Ramsey of Tampa, Fla.; and by many cousins.

rips22

Originally uploaded by jilly999

My dad’s drive-in.

My mom has died, so I’m taking a break.

Thanks for your patience.

If you link here, please email me – I need to rebuild my hundreds of blogroll links. Include the blog name and URL. It’ll be a while.

:/

I’m home woo hoo.

Today is Rare Disease Day.

Info:

The last day of February has been designated as worldwide “Rare Disease Day” to call attention to the public health issues associated with rare diseases, which affect nearly 30 million Americans and countless others around the world.

“People with rare diseases remain a medically underserved population in every country,” said Peter L. Saltonstall, president of the National Organization for Rare Disorders (NORD), which is sponsoring Rare Disease Day in the U.S. “This day is intended to bring together the patients and families with rare diseases to discuss the need for greater awareness, more research, and better access to diagnosis and treatment.”

More than 200 organizations, institutions and companies have signed on as “Rare Disease Day Partners” in a U.S. coalition supporting the special observance. The coalition, being coordinated by NORD, includes patient organizations, professional societies, government agencies, medical researchers, and pharmaceutical and biotechnology companies.

Rare Disease Day activities in the U.S. will include a nationwide network of online videos, patient stories and blogs; newspaper, radio, and television reports; state and municipal proclamations; a Rare Disease Hall of Fame for researchers; and other activities designed to raise awareness of what it means to have a rare disease.

A rare disease is one that affects fewer than 200,000 Americans. According to the National Institutes of Health (NIH), there are nearly 7,000 such diseases affecting nearly 30 million Americans.

“People with rare diseases often face challenges that occur less frequently with more common diseases,” Saltonstall said. “These include delay in getting an accurate diagnosis, few treatment options, and difficulty finding medical experts. Many rare diseases have no approved treatment, and insurance may not cover treatments that aren’t approved. Medical and social services may be denied because those making the decisions are not familiar with the diseases. Also, treatments for rare diseases tend to be more expensive than treatments for more common diseases.”

In 1983, the Orphan Drug Act was passed by Congress to create financial incentives for companies to develop treatments for rare diseases. Since then, nearly 330 “orphan” (for rare diseases) drugs and biologics have been approved by the U.S. Food and Drug Administration (FDA). FDA estimates that from 11 to 14 million Americans benefit from these products. However, that still leaves more than 15 million Americans with diseases for which there is no approved treatment.

Rare Disease Day also will highlight the unique partnership that exists among the patient community, government entities such as the NIH Office of Rare Diseases and FDA Office of Orphan Products Development, medical professionals, researchers, and companies developing orphan products.

Although this is the first Rare Disease Day observance in the U.S., it is the second globally. The concept was launched in Europe last year by the European Rare Disease Organization, EURORDIS, a sister organization to NORD. This year, Rare Disease Day also is being observed in other parts of the world, including Canada, Australia, and China. The plan is to have a global Rare Disease Day on the last day of February each year.

NORD, a federation of individuals and patient organizations, was established in 1983. It provides advocacy on behalf of the rare disease community; research grants and fellowships; educational services; and patient assistance programs.

For more information about Rare Disease Day activities in the U.S., go to NORD’s website (http://www.rarediseases.org). For information about the global observance, go to www.rarediseaseday.org.

Source: National Organization for Rare Disorders (NORD)

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I will return in the beginning of March. In the meantime, please enjoy this:

link

I will return in the beginning of March. In the meantime, please enjoy this:

link

I will return in the beginning of March. In the meantime, please enjoy this:

link

I will return in the beginning of March. In the meantime, please enjoy this:

link

I will return in the beginning of March. In the meantime, please enjoy this:

link

I’m halfway done at the Autonomic Dysfunction Clinic. It is going well I guess. I’m lucky in a way, not that I have problems with gravity LOL, but that THE experts are here in town. Unfortunately, POTS is still pretty much a mystery.

Dr: Do you have any questions?
Me: Yes.
Dr: OK but my answers will probably be “I don’t know.”

LOL.

All I can say is that it really sucks and makes *everything* a big freaking effort. I need to move to the moon.

It’s like I fell into a bizarro world about a year ago.

I have another test in about a half hour that will take about 4 hours.

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And speaking of Vanderbilt, on Wed night Nashville Public Television is showing their documentary about the Fugitive poets.

I have watched more TV in the past 5 days than I had watched in the past couple years, I swear.

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