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!

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.

FOR THE FOUNDATION: Bruce A. Waite Miles for Meso 5K

Bruce RunningJill Waite contacted the Meso Foundation earlier this year in hopes of planning her first fundraiser to honor her late father, Bruce Waite, who died from mesothelioma.

Bruce Waite on one of his daily runs.

Nearly ten years after his death, Jill has organized the first Bruce A. Waite Miles for Meso 5K in Ontario, OH on Sunday, September 23, just 3 days before Mesothelioma Awareness Day.  Bruce was a teacher with over thirty years of service to his students, and Jill has been overwhelmed by the outpouring of support that has come from her father’s former students, friends and family from all over the country.  She has learned even more about her dad and his legacy from the stories she has heard from the people coming out of the woodwork.

“One student told me Dad made the difference between prison and college for him.  One student wrote me that Dad sent him a congratulatory note as he graduated from college.   Every day, I end up in tears, not even from sadness, but from pride.  And to this man who had so much humility that he truly felt he had no impact, I look up to the sky and tell him this is the only time he was wrong,” says Jill.

Jill chose to organize a 5K in honor of her father because running was also a huge part of his life, never missing one of his daily runs for 33 years. She knew that 2012 was the year, stating “as I turned 50, I realized that I did not want to celebrate without Dad – so I decided it is the perfect year to have the Bruce A. Waite Miles for Meso 5K Run/Walk.”

This is not the Waite family’s first fundraising effort in honor of Bruce, in fact they have established a scholarship fund for graduating high school seniors interested in pursuing a career in education. One of the scholarship recipients will begin teaching this fall, and will be teaching some of the same literature Bruce taught.

Jill is committed to continuing to raise funds to support mesothelioma research, saying “If part of Dad’s legacy is to help raise monies for meso research so other families can be spared what we endured, then, as his daughter, I have no choice but to continue the fight.  I count it an honor.”

To find out more about the Bruce A. Waite Miles for Meso 5K, visit their website: www.brucewaite5k.com

Interested in hosting a fundraiser for the Meso Foundation? For more information on giving of your time and talents in your area and planning your own fundraiser, contact Sean Haynie at (703) 879-3823 or email him at shaynie@curemeso.org.  You can also find out more information on being mentored by our Fundraising Co-Chairs Shelly Kozicki and Erica Ruble by visiting our website at http://www.curemeso.org.

Social Media Moment: Hiding Your Friends on Facebook

We have talked before about the importance of not sharing everything on your Facebook page. What tends to be the most common mistake in social media (regardless of the platform) is sharing too much or simply sharing with the wrong people. So it’s always good to take precautions.

Did you know, though, that you could be sharing without realizing? This unknown, and sometimes unwanted swapping of data is due to the default settings of your Facebook account. Once you have signed up, created your online identity, and logged on, Facebook already has you sharing more than just your favorite photos and current check-in’s. It’s also sharing those people in your network.

Why is this important to control?

You may want to be open and public with your own opinions, but there is the matter of friends you may want to keep hidden from the same public eye. You may not want to openly share with the world the people that populate your network. With your Friends list complete open to the public, anyone — anyone — can go through your Friends gallery, click on any name, and request a connection. If you know that you have a friend that may be a touch shy and unwilling to meet new people on a whim; or if you are protective of your network and wish to only share its membership with people you really know, protecting your Friends on Facebook is quite easy.

  1. Go to Facebook and log in (if you are not logged in already).
  2. Go to top-right corner of your Facebook page, there is a menu there that has your name, Find Friends, and Home. Single-click on your name. (You may also see your name under the “Facebook” logo at the top-left of your screen. You can click that, too, as that link also takes you to the right place.)
  3. You should see your “Friends” gallery to the right of your Statistics (your job, where you’re located, where you went to school, etc.). Go on and single-click your Friends gallery to enter it.
  4. At the very top of your Friends list, you will see towards the upper-right (just underneath your name) two buttons: “Edit” and “Find Friends.” Single-click the “Edit” button.

  1. A window appears that reads “Who can see your full friend list on your timeline?” and also shows (by default) a small icon of the world. Single-click the “globe” icon to reveal your options.
  2. In this drop menu of options, you can either have your Friends be:
    1. Public: This means everyone is visible to people who are friends with you and with casual people just looking at your webpage.
    2. Friends: Only your approved Friends will have access to your Friends list.
    3. Only Me: This option will make your Friends completely Private, so you and only you will be able to see your network.
    4. Custom: This takes a bit more planning but here you can make your Friends visible to the people in your network, just you, specific lists you create, or people tagged in photographs. Another option offered here is you can hide your Friends from specific people or lists in your network.
  3.  Choose your option and the “Edit” window closes automatically.

This is how you can keep your Friends and your network secure from unwanted attention. By locking down your network (the tightness of that lockdown clearly up to you), you can now protect your friends from unwanted or unwarranted contacts. At the Meso Foundation we know how serious you take your privacy, and if you are concerned about the privacy of your friends, as well, we are here to make sure when you update a status or share a photo, you do so safely and securely.

That addiction to Farmville, however…no, we can’t help you there. Sorry.

For more information on available resources and online communities, visit our website at http://www.curemeso.org.