Thursday, May 21, 2015

You may have heard that earlier this week the Federal Trade Commission filed a lawsuit against four cancer groups for defrauding donors. The four organizations collected $187 million between 2008 and 2012. Founder James Reynolds, Sr. and his friends and family members operated all the “sham” organizations. Less than 2 cents of every dollar donated went to aid for cancer patients. 

Let's be clear: this is not ALL cancer charities. Many organizations are working hard to find a cure for cancer, provide services to patients and families and fund research. With the government contributing less to fund medical research and provide services to patients, cancer charities are more important than ever.

How do you know if your donation supports the cause that is important to you?  Donors have to do some due diligence before making a gift. Several groups, including Wise Giving Alliance, Charity Navigator and Charity Watch evaluate millions of charities on a regular basis and are easily searchable online.

If you get a late-night phone call or see a fund box in the supermarket, ask basic questions: How long has the charity been in business? How much goes toward programs, staff, and board members? The more questions you ask, at some point, either they will get tired of answering or they will give enough information to make you comfortable.

You should also check the 990 of organizations you support (we list ours here and understand how they are spending your money.

To see what the Better Business Bureau’s Wise Giving Alliance, Charity Review Council or Guidestar says about the MPN Research Foundation, go to our website and click on the link “Our Accreditations” at the bottom of the page.


Give from the heart, but give smart.

Monday, May 4, 2015

Help fix Medicare's gap of coverage for Myelofibrosis patients seeking a stem cell transplant

I just submitted my first public comment ever to the Centers for Medicare and Medicaid Services (CMS), the body that governs what is covered by Medicare and Medicaid. By the time you finish reading this I hope you'll decide to follow suit. 

In my position at MPN Research Foundation I have had the opportunity to interact with many myelofibrosis patients, as well as people with polycythemia vera and essential thrombocythemia. Patients face anxiety about what the future holds for them as they struggle with MF, for which there is only one cure that works for a portion of the population: a hematopoetic cell transplant.

There is data to back this up, and also there's stories like Ron's

Right now, there is no standing rule that Medicaid will cover the costs of a Stem Cell Transplant for people living with Myelofibrosis. Without guarantee that this is covered, patients and hospitals face severe financial risk that has already kept people from getting a SCT even though their physicians recommend it. 

Medicare should be encouraged to explicitly cover transplant for myelofibrosis. Be the Match and the American Society for Blood and Marrow Transplantation (ASBMT) have lobbied CMS to open a National Coverage Analysis on coverage for Myelofibrosis. 

This is where you come in. We are joining with Be the Match and ASBMT to encourage the public - YOU - to submit a comment to CMS about why it is important to MF patients seeking care they and their doctors decide they need. This is a chance to tell your story. Put in your own words why this is unjust. Click here to submit your comment before the deadline - May 30th. 

If you have any questions or comments get in touch at 312-683-7243 or