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I support rare disease day

I support rare disease day

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Rare disease day is here! This is the one day where I can celebrate my uniqueness. With a bunch of other uniquers. Haha! It’s nice to talk to people who have DM and get that ‘uh huh’ and ‘oh yah!’.

Even though the word rare means

rare1
re(?)r/
adjective
  1. 1.
    (of an event, situation, or condition) not occurring very often.
    “a rare genetic disorder”
    synonyms: infrequentscarcesparse, few and far between, thin on the ground,like gold dust, as scarce as hen’s teeth;

    we still have a large amount of people with rare diseases. I think it’s like 30 million people in the US have a rare disease and there’s around 7, 000 rare diseases on the list. It makes it hard to get funding for research, hard for people to connect with others with their same condition. I read this somewhere (don’t quote me on this) but I think it said like 95% of rare diseases don’t have one FDA approved treatment for their disease.  That’s just nuts.

    I’m going to link a few places to check out, if you’d like to spread the word, read up, or meet some people like yourself. 🙂

     

    National Organization for Rare Disorders

    Rare Disease Day USA

    World Rare Disease Day, The Global Gene Project

    Offices of Rare Disease Research

    The Voice of Rare Disease Patients in Europe

    Eurordis Rare Diseases Youtube Channel

    I hope you all are having a great day. I’ll be back to blog soon.

    Until next time,

Cure JM a finalist! 250,000 for research!!!!

Cure JM a finalist! 250,000 for research!!!!

I just wanted to drop a quick THANK YOU for all of you out there who diligently texted and facebooked and on-site voted for Cure JM to win in the Pepsi Refresh Challenge.  Oh my gosh, I still can’t believe we won!!!!!  It’s amazing, wonderful, incredible, and oh so needed! Thank you. All the children with JM have some more hope for a cure with the 250,000 prize money to go towards research.

Love to you all,

Pepsi Refresh Project; Cure JM in 4th Place!

Pepsi Refresh Project; Cure JM in 4th Place!

Introducing the Pepsi Refresh Project. Pepsi i...
Image via Wikipedia

I posted earlier about Cure JM having a chance at a $250,000 grant from Pepsi and we still do! Voting is open until the end of August. In July we were in 12th place and as of today we are in 4th. Woot Woot!!  The top two will each receive the grants.  This is so amazing, it is truly within our grasp if we all vote and pass along to our friends to vote too.  Will you please take a moment and text to vote, stop in at Facebook and vote and please ask your fb friends to do the same.  It is such a worthwhile cause, I know firsthand the pain and crippling effects this disease has and I can’t even imagine a child having to go through any of it.

To find out more about Juvenile Myositis and the organization Cure JM, check out the video and follow the links below to vote. Pepsi is giving us an amazing opportunity to help our kids with JM and we are so close! Thank you to all of you who are following this and voting. God Bless!

A message from the facebook group:

Thanks for making a difference by helping Cure JM move into 4TH PLACE in the Pepsi Refresh contest, where we are competing with over 400 organizations for a $250,000 grant.

We need to be in the TOP TWO at the end of August to win this grant. Every penny of this grant will go towards research, including an important JM genome study and a cardiovascular risk study in patients with JM. The remaining funds will go towards the Cure JM Program of Excellence research center in Chicago.

We would like to share a recent Facebook post from a JM family, who has played an integral role in the Cure JM Foundation:

“Know how I remember to vote everyday???….Inserting Mason’s feeding tube, giving the IV meds he needs this morning to keep him alive, plus the other meds used to strengthen his depleted bones, and the meds to lower his blood pressure so his enlarged, calcinotic heart will hopefully get better; replacing the pain patch…”

Please vote so that Mason and all of the children with JM can have hope for a better future. Vote THREE times each day, everyday to help Cure JM:

– Text Vote to Pepsi (73774) Type: 100850 to vote *(Stnd txt msg rts apply)
– Vote via FB app: http://www.facebook.com/l/0a580WbtmPvlJZ9FqZauzEfO3eg;bit.ly/CureJMonFB
– Vote for our entire “Kids to Win” team at: http://www.facebook.com/l/0a5806ZfUlE2jdhvEYHUpKnXhvA;pep.si/CureJMKidstoWin4

Sign up for Daily Voting Reminders (and be entered into a contest to win a FREE iPad if Cure JM wins!), please register here: http://www.facebook.com/l/0a580eNdDWUEzr_ZtywByGjqW2w;www.curejm.org (Note: Names and emails will NOT be shared with anyone and are only used for daily voting reminders).

Cure JM Partners in Pepsi Gulf Projects
These groups in the Gulf Projects category are heavily supporting Cure JM. Thank them by using your additional votes in the Gulf categories, which are completely separate from the “regular” Pepsi Refresh voting. Voting links for the three groups we have aligned with are as follows:
http://www.facebook.com/l/0a580NC02G4Vkimv5W1P6uJBcgA;gulf.refresheverything.com/plci
http://www.facebook.com/l/0a580iI6HECgEjWhCqQJHh4J3Kw;gulf.refresheverything.com/mhc
http://www.facebook.com/l/0a580W_EmhYhDIGCaajmFqVCDLw;gulf.refresheverything.com/homesofhope2

Make Juvenile Myositis A Memory!

Make Juvenile Myositis A Memory!

Pepsi is hosting a contest and is giving away 250K to the winner! I’m supporting Make Juvenile Myositis a Memory by The Cure JM Foundation.  About 5,000 kids in the US are affected by this disease, putting it in the ‘rare disease’ category. But just because that number isn’t astronomical, doesn’t mean that they don’t need the funding. These kids are suffering with a painful, debilitation, potentially life threatening disease.

Here’s a video about Emma’s story with JM-

Will you please vote with me and help these kids have a chance at some research grants?  You can go to the Pepsi site and vote at http://www.refresheverything.com/makejmamemory and also on Facebook at the Pepsi Refresh Voting App. You can vote once each day on each site for this cause, but you get to vote 10 times in each day if you have other causes you support.  Thanks in advance, we really have a chance guys. We are in 12th place right now with over 1,000 applicants and there is 7 days to go! Please vote each day if you can.  Thank you!

Have lupus? The Lupus Alliance of America needs your help

Have lupus? The Lupus Alliance of America needs your help

In the beginning of my illness, I was told that I had lupus. I immediately went home, cried, then read everything I could get my hands on. I was online reading medical journal material, lupus blogs, lab reference sites, everything and anything (except for sites with no reputation, and the ‘cure all’ sites, ugh).

I joined a support group for people with lupus and friends and family of lupies. We shared stories of pain, grief, frustration, triumphs, symptoms gone mad, remissions, and bonded because of a common link-chronic invisible autoimmune disease: lupus. I have never in my life met so many strong women. Of course when I got sick I felt very alone. I soon found out that there were thousands of women and dozens of men on this site who were going through, or had gone through everything I was experiencing. I learned how to stand up for myself at the docs, how to keep records and manage them, find out where to look for lab explanations and the many acronyms, and most of all I learned that I COULD survive this. I could even conquer it some day. After about a year and a half, I let go of that group. It wasn’t because I didn’t enjoy it anymore, or that the docs told me they didn’t think it was lupus. It was just time. As I was leaving, dozens more were joining. Each one as scared as I was that first day in the room.

I will always advocate for a cure for lupus. Whether I have lupus or not it has a place in my heart forever. It is such a devastating disease, and was one of the most overlooked.

Now lupus is finally getting out there getting talked about and people in the entertainment industry are advocating for research and a cure. Say what you will, but when famous people stand behind a cause, people listen. Lupus voices are being heard. And a new drug! The first one in 50 years!!! Can you believe that? 50 years. It’s just unforgivable that it was ignored for so long, but thank God there is a new medicine.

We should all keep talking and bringing awareness to this disease and other autoimmune diseases; Multiple Sclerosis, Ankylosing Spondylitis, Antiphospholipid Antibody Syndrome, Graves Disease, Chron’s Disease, Dermatomyositis, Meniere Disease, Rheumatoid Arthritis, Insulin dependent Diabetes, Mixed Connective Tissue Disease, Schleroderma, Myasthenia Gravis, Ulcerative Colitis, Cardiomyopathy, Addison’s disease, Vasculitis and many, many more.

I’m gonna stop here and just ask, if you have lupus or are a parent of a child with lupus, will you please take the survey? It’s put out by The Lupus Alliance of America, it takes about 30 minutes and it’s results will help them learn what people with lupus are in need of, and the data will help spread awareness and speak of what effects lupus has on the people with the disease. Remember, awareness is key. It’s not going to be able to be swept under the rug anymore. It needs immediate attention, more funding for research to find a cure. Check this statistic out, it’s from the AARDA site

NIH research funding for AD in 2003 came to $591 million. In comparison, cancer funding came to $6.1 billion; and heart and stroke, to $2.4 billion (source: NIH).(AD: autoimmune disease)

You can go directly to the survey by clicking on the survey logo below.  At the bottom of the page is a link to the Lupus Alliance of America’s website.  Thank you.

Until next time,

2michelle


Survey

In the last ten years Lupus has finally started to get the attention the over 2 million Americans who suffer from it have long dreamed of.  From garnering special focus at the National Office of Women`s Health and the Office of Minority Health, to National Awareness campaigns and more research on lupus, and the development of new medications to treat lupus, those living with the disease are more encouraged than
ever before. But more work is yet to be done.

This is a very important time for lupus research and the Lupus
Alliance of America needs your help. To further the dream of greater public awareness, much needed government support and diligent research into the cause, cure and treatment of lupus, The Lupus Alliance of America, its affiliates and L.I. CW Post have designed a voluntary survey to help gather statistics to assist them in achieving those goals.

JC VanderPutten
Lupus Alliance of America

http://www.lupusalliance.org


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

Good News from the Arthritis Foundation

Good News from the Arthritis Foundation

I just got this email from the Arthritis Foundation and instead of me trying to explain it ( I have no brain today)  I’m just copying and pasting the e-mail.  By the way, I’m advocate…   🙂

Arthritis Legislation Update
Dear Advocate,

As we near our nation’s birthday we wanted to share some preliminary good news regarding your advocacy efforts. Last week, the Senate Appropriations Committee recommended that the National Institutes of Health receive a 3.5% increase overall. Although the Arthritis Foundation and many other organizations were requesting a 6.5% increase for NIH, the 3.5% increase represents the first time in six years that funding for NIH research has kept pace with biomedical inflation. The National Institute of Arthritis and Musculoskeletal and Skin Diseases received a 2.9% increase with a recommendation for $523 million in Fiscal Year 2009. Due to Arthritis Foundation advocacy, the Committee specifically recommended the following in its approved bill:

“Arthritis – the Committee supports the establishment of a national data collection system to ensure that the safety and effectiveness of new arthritis treatment is understood and that they are applied in the most beneficial manner, especially in the case of childhood arthritis. The Committee also notes the strong need for a national network of cooperating clinical centers dedicated to the care and study of children with arthritis.”

This Committee Report language was first shared with our advocates and Congress during the Advocacy Summit in Washington DC. This language is extremely important and indicates to NIAMS that Congress considers juvenile arthritis a priority and one that deserves more attention.

The Senate Appropriations Committee also recommended a 1.2% increase for the Centers for Disease Control and Prevention, raising their budget from $6.4 billion to $6.5 billion (a $76 million increase). Due to the advocacy efforts of the Arthritis Foundation, including the Chapters, our grassroots advocates and our Arthritis Ambassadors, the arthritis program at CDC received an increase of $500,000, which is nearly a 4% increase, for $13.5 million in Fiscal Year 2009. Once both the full House and Senate pass their committees’ versions, the differences between the two must be reconciled, passed again and then sent to the President for his signature. The appropriations process is far from over, and we will be reaching out to you in the coming months to continue your advocacy work to let Congress know more needs to be done for people with arthritis. Thanks to all of you for continued advocacy efforts to increase federal attention and resources for both adults and children at the NIH, CDC and in states throughout the nation.

Have a happy and safe July 4th!

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