Browsed by
Tag: Lupus Foundation

The story of ‘Lucy’ by Julian Lennon and James Scott Cook

The story of ‘Lucy’ by Julian Lennon and James Scott Cook

Here’s a little info from Julian Lennon about Lucy.  I really like the song, it’s catchy.  Check out the video, it’s an interesting story, and remember you can download the song from iTunes and portions of the proceeds goes equally to The Lupus Foundation of America (LFA) and the St. Thomas Lupus Trust in London.

This is a short PSA 🙂

And now the video and song!.Enjoy and don’t forget to purchase a download. It’s helps fund research for a cure!

Until next time~

2michelle

Julian Lennon and James Scott Cook Raise Awareness and Funds for Lupus Research

Julian Lennon and James Scott Cook Raise Awareness and Funds for Lupus Research

This just in, to my inbox anyway!! I am so happy, excited, ecstatic, and all the other gleeful descriptive words!!  Not just money for research, but BIG names raising awareness! Weee hooooo!!!  Check it out-

Julian Lennon and James Scott Cook Raise Awareness and Funds for Lupus Research

November 24, 2009

Proceeds from the song, “LUCY,” will be donated to the Lupus Foundation of America and the St. Thomas Lupus Trust

Washington, DC, November 24, 2009 — Julian Lennon, son of the legendary John Lennon, and James Scott Cook announced today that they will donate a portion of the proceeds from their song, “LUCY,” to fund research on the disease lupus. The song was created to honor Cook’s 92-year-old grandmother, Lucy Cook, who has been living with lupus for years and Lucy Vodden, a childhood friend of Lennon’s who recently passed away at the age of 46 after a long battle with lupus. Vodden was also the subject of a drawing that Julian created which inspired his father to write the memorable Beatles hit song “Lucy in the Sky with Diamonds.” Proceeds donated from the song, “LUCY,” will be shared equally by the Lupus Foundation of America, Inc. (LFA), and the St. Thomas Lupus Trust in London.

Sandra C. Raymond, LFA President and CEO, issued the following statement:

“We thank Julian Lennon and James Scott Cook for their generous support, which will not only help fund lupus research, but will also go a long way to help raise awareness and draw international attention to this perilous disease. All proceeds from the song will be restricted for use in LFA’s National Lupus Research Program, Bringing Down the Barriers, which directs grants to lupus researchers in academic medical centers throughout the United States for research on the causes and epidemiology of lupus, pediatric lupus, lupus kidney disease, cardiovascular disease in lupus, adult stem cell transplantation, novel approaches to the development of new treatments, among other areas.

“We applaud Julian and James for calling attention to the urgent need for lupus research. It has been more than 50 years since the U.S. Food and Drug Administration (FDA) approved a new treatment for lupus. In fact, to date there has never been a drug approved specifically for lupus, since the disease was discovered more than a century ago. Physicians who treat people with lupus often must rely on medications that have toxic side effects; some side effects are worse than the disease itself. For people with lupus, finding less toxic therapies is vital to not just their quality of life, but for many, their survival.

“Lucy Vodden and Lucy Cook represent people with lupus around the world who are either living with lupus, or have succumbed to the disease, demonstrating the varied and sometimes devastating impact that lupus can have on individuals and their families. This life altering disease typically strikes young women in their childbearing years, yet a public opinion survey demonstrated that 80 percent of women know little or nothing about the disease.

“Our hope is that the efforts of Julian and James will inspire others, and serve as a catalyst for the public to join us in working to change the future for the millions of people around the world like Lucy. We encourage people to pay tribute to both of these women and all those living with lupus by downloading the song ‘LUCY’ through iTunes beginning December 15, 2009.”

Related Information

Julian Lennon, decade later, back in music biz with ‘Lucy’

from   http://www.lupus.org/newsite/index.html

LFA’s Advocacy Day for Lupus

LFA’s Advocacy Day for Lupus

{{Potd/2005-11-2 (en)}}
Image via Wikipedia

It’s hard to believe another year has blown by and it’s March and with that the LFA’s Advocacy Day.  This time last year I was under the impression that I had lupus.  All of my symptoms were ‘lupus-like’ (still are) and after my first blood work came back with a positive ANA, C reactive protein, and sed rate, my primary care doc called me and my hubby in and told us that he was sorry and that I had lupus.  I will never forget the look on his face or everything really.  The complete quiet after he said that, the smell of his office-antiseptic and mint, the clock ticking and my own breathing.  After leaving his office, we both broke down and cried.

It’s been a long road since the day in his office.  I’ve learned so much.  The very first thing that I learned was one +ANA does not a lupus diagnosis make.  Since there is no one test to verify lupus and a lot of autoimmune diseases have the same symptoms or overlap, it’s pretty tough to get a firm diagnosis quickly.  I read and read and read, anything and everything I could get my hands on.  I found a good online support group for lupus patients and also people who were waiting a diagnosis.  I learned more from those wonderful people than I did from any article.  After getting online and finding the group, I started reading blogs of people, usually women, who were living with SLE.  I started tossing the idea around in my head to start this one.  I ‘met’ so many absolutely amazing women and men while I was on my quest for knowledge straight from the source, the people who have it, I was awed by how open and truly helpful they all were.

I found one blog written by the husband of a lupus survivor (warrior, pick one, lol).  His blog is different in that it comes from the perspective of the other half of the team, the well one.  All of the frustrations in dealing with doctors and tests and being a husband and watching your wife suffer.  With no cure.  And with all of the other things that come along with living with a chronic illness that’s sneaky, cruel, and painful.

I was cruising my blogs and saw this post that Jeff wrote about Advocacy Day in DC.  Stop by his blog and have a read.  There are some cool tips on what we can do to participate even if we are not in DC today.

Until next time

Michelle

Enhanced by Zemanta
%d bloggers like this: