Rare Disease Day 2013

Aside

RDD_whiteToday, February 28th is Rare Disease Day.  Rare Disease Day is an international advocacy day to bring widespread recognition of rare diseases as a global health challenge. The day is celebrated on the last day of February every year.  In the United States, any disease affecting fewer than 200,000 people is considered rare.  Mesothelioma is estimated to be diagnosed in 3,500 American each year, making it very rare.

This year is a very important year for rare diseases, as 2013 marks the 30 year anniversary of the Orphan Drug Act (ODA).  The ODA changed the way that pharmaceutical companies viewed rare diseases, like mesothelioma, and the ways they sought to treat them.  The ODA created incentives for the development of treatments for Orphan diseases.  The ODA grants a special status called an “orphan designation” to a product to treat a rare disease or condition upon request.

The ODA was approved by the U.S. Congress in December 1982 and signed into law by President Ronald Reagan on January 4, 1983.  The ODA is considered very successful and has resulted in more than 2,700 potential therapies in the research pipeline and more than 400 approved products.[i]  Cancer was the main group of diseases that was targeted for orphan approvals.[ii]  Twelve of the drugs that have received an orphan designation for the treatment of mesothelioma, including the one FDA approved treatment that is currently available to mesothelioma patients, Alimta.

The Meso Foundation is a member of the National Organization for Rare Diseases, and is proud to represent the mesothelioma community in this regard.  We have joined other member organizations in meetings at the NIH and the FDA, and routinely work together in our advocacy efforts.

To learn more about Rare Disease Day, visit:

http://rarediseaseday.us/

To learn more about Orphan Drug Designations, visit the FDA website:

http://www.fda.gov/ForIndustry/DevelopingProductsforRareDiseasesConditions/HowtoapplyforOrphanProductDesignation/default.htm


[i] www.fda.gov Accessed February 20, 2013

[ii] Orphanet J Rare Dis. 2008 Dec 16;3:33. doi: 10.1186/1750-1172-3-33.  Incentives for orphan drug research and development in the United States. Seoane-Vazquez E, Rodriguez-Monguio R, Szeinbach SL, Visaria J.

Why the Foundation?

LogoBoxesRegisteredThe Meso Foundation realizes that there are numerous groups that you can affiliate with, provide your stories and attempt to raise awareness but it seems as if many are just going about this in the wrong way. To begin with, have you really looked into the Facebook pages or websites that you are supporting? Are they transparent in who they truly represent? Most often this is not the case.

The Foundation is your only 501(c)3 not-for-profit that is dedicated solely to finding a cure for mesothelioma. Our executive director and nurse practitioner, Mary Hesdorffer, is uniquely qualified to assist you in managing your disease and understanding all of the options that are available, be it a clinical trial or a more standard form of treatment. Mary spent years actively treating mesothelioma patients and writing clinical trials and papers that have been published in peer-reviewed journals. She understands the disease and brings a unique perspective to the Foundation both as a medical professional and patient advocate.

Patient advocate is a term that is widely used in mesothelioma, but who are these advocates? Who do they work for and what motivates them to advise you? Many nurses have been hired by legal entities but do you know that they have never worked in a mesothelioma clinic, and are trained in this disease by the law firm that surreptitiously pays their salary?

Hmmm… seems that we have some serious conflicts in this disease and it is about time that everyone takes a step back and thinks about what is truly best for the patient and the disease in general.

As the Meso Foundation is not a business model, we are not beholden to any institution or legal entity. We are independent and trustworthy which sets us apart from many of the “faces” you encounter on the web. Facebook is new to many of you and we ask that you think before you click the “Like” button, stop before you fill out an on-line form. Think. Where is your information going? Whose cause are you supporting?

You have more power than you realize and the capacity to effect change. We invite you to become more closely involved with the Meso Foundation, support our mission and assist us in getting unbiased information directly into the hands of those who are affected by this disease. We have a peer-reviewed research program where we provide grants which we hope one day will not only lead to more effective treatments but to a cure. We have testified before Congress multiple times. Through our direct advocacy efforts we have secured much needed federal funding for mesothelioma research. You can view this expert testimony here.

We invite you to visit our website www.curemeso.org, call us at 877-363-6376. If you’re on Facebook, please “Like” our Facebook page so you can receive the latest news about research, support, and advocacy. We are the real deal- we are your nonprofit and we need your support!

THE TOP 10 REASONS TO GO TO THE MESO FOUNDATION’S 2013 SYMPOSIUM ON MALIGNANT MESOTHELIOMA

bonnie_aMesothelioma – by now you all know how to pronounce it, and you know that being informed is important. You also know about the Mesothelioma Applied Research Foundation or you wouldn’t be reading this blog. But did you know just how amazing their symposia are?

Let me give you an example of just a few highlights that I’ve seen:

1. People hugging people just because they have this disease in common and needed a hug.
2. Meeting a man in the hotel elevator who had a meso name badge, speaking to him and finding out he is Dr. Harvey Pass, the guru of mesothelioma. (We have since had many conversations together.)
3. Hearing the top meso specialists in the world speak about treatment, hope and the future of research.
4. Meeting a researcher who knew who I was because he works on my slides in research.
5. Letting researchers know how important their work is to patients and families.
6. Giving hope to a young mother who came because she had no idea where to turn to and didn’t know what to do next.
7. Putting a face to a name for those who have and will need support.
8. Knowing you are really not alone and there are others who can help.
9. Running out the door, to grab a hold of a doctor who just gave his speech and have him listen and talk to you on a personal level to answer your questions.
10. To meet other caregivers, patients and families affected by mesothelioma.
11. To be able to sit at a table with researchers and doctors and see that they are touched to know patients and families out of a clinical setting.
12. And finally… to meet Mary Hesdorffer, the woman who has helped save so many of us.

Ok so I lied. Not 10, but so many more reasons for you to attend the Symposium. I guarantee you will be so glad you did.

By Bonnie Anderson

Erica Ruble’s Symposium Story

erica_rubleFive years ago when my dad said, “I have mesothelioma,” I sat in disbelief. What was this disease? I could barely even pronounce it. What did this mean, for my dad, for me, for our family? A flood of emotions ran through me and the panic set in as I read about this orphan disease on the web. Within weeks my dad and mom were flying to New York for treatment while I was in Florida caring for my newborn baby, who was just a few weeks old. Our lives were changed forever.

My dad underwent every treatment option available but lost his courageous battle to mesothelioma in just 12 months. Feeling sad, angry, and wanting answers, I flew to my first Symposium in Washington DC. Three days later, I left DC with a purpose and plan. Following the lead of Shelly Kozicki, who lost her husband to mesothelioma, I decided to fund a research grant. In my heart, I felt my dad suffered and died for no reason. This was my chance to give meaning and purpose to his death by helping others. My dad was the type of man who believed in “doing the right thing.” Now it was my time to follow in his footsteps. To date, with the help of my family, I have raised over $207,000.00 for mesothelioma research. Each time a dollar is raised, I think of my dad and how his life is helping someone else’s life.

Attending the Symposium four years ago was one of the best decisions I ever made. Connecting with the community and sharing stories made me realize two things. First, I am NOT alone. Second, we CANNOT give up. We have to keep fighting for not only those who are sick but also for ourselves. If we don’t do this, who will?

I encourage the mesothelioma community to attend the Symposium in Las Vegas on March 7th and 8th. It is undeniably the only Symposium to encompass all facets of mesothelioma through advocacy, community, and research. Whether you are a patient, caregiver, supporter, or have lost a loved one, the Symposium will touch your life. We all have an opportunity and a chance in life to help others. This is your chance to not only help yourself but to make a difference and leave your imprint on the mesothelioma community.