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

Wednesday, April 22, 2015

PA Support Group Leader, Jean Diesch, Rally's "MPN Warriors" to raise Awareness at the  "Light the Night Walk" during BCAM.

We took a few minutes to talk with Jean about her experiences as a Support Group Leader. Prepare to be inspired!

Why did you become a Support Group Leader?
I became a Support Group Leader for a variety of reasons. The core reason is that I love to help people. When I was diagnosed, it was difficult finding information, whether it be medical professionals treating the disease with the latest treatments, learn what the latest research is or talking to someone that simply understood my experiences. When presented with the opportunity to start a Support Group, I had no other choice. It gave me a purpose. I retooled my skills that I developed from my work experience to focus on helping others.

Where did you begin your journey as a SGL?
My journey to start a Support Group began at the time I attended the MPNRF Educational Conference, in Chicago, IL, 2012. I was so amazed. The presenters and the quality of research and the wealth information presented were outstanding! There were approximately 200 people in the room; they too were thirsting to learn about our disease. I asked one of the conference planners if they could bring this program to my home town. They informed me that it was not possible at that time. They told me the best way to get the information out was to become a Support Group Leader. So I set out to do just that!

What were some of the challenges you came across? How did you overcome them?

My challenges in the beginning were that there was no real direction as to how to become a Support Group Leader. I was not a social worker and I had no medical experience, nor did I ever attend a support group meeting, I just was living with this disease! I contact the MPN Research Foundation to find out who the other Support Group Leaders were. I spoke to them over the phone. They told me what they were doing at their meetings. I contact other cancer groups, but didn’t get a lot of support due to the fact that I was not a social worker nor did I have any form of medical experience. I eventually received information from and individual who gave me some additional direction. I then contact several places to have a meeting however, they wanted to charge me. Eventually I was given a room at the local community hospital. I requested the room for 2 month in advance not having any patients in the group. My next step was to find patients! I requested the MPN Research Foundation notify their patient base to inform people of the meeting time and place. At the first meeting I had 4 patients, 2 widows to the disease, and 3 caregivers. Getting this group together was like making a cake backwards; had the end product a good cake but didn’t know what the ingredients were, didn’t know what it tasted like or how long to bake it!

I have a major challenge with the 2 major hospital groups in our region. They are more interested in their concerns of their “MODEL HOSPITALS” instead of caring for the needs of the sick patient! Other challenges were that I did not get a lot of support from the physicians’ offices. Some physician offices simply have told me “They Don’t support, Support Groups!” I have persevered and reach patients and patients have found me whether it be Facebook, flyers that I post, emailing’s to physician’s office or simply work of mouth.

Currently, we meet at the former “Gilda’s Club of Western PA” now known as “Our Club House.” They have been very supportive of our needs. If we have a “Meet the Doctor” program they provide us with a great meeting room and all the amenities; conference phones, projection equipment, large screens and etc. Another reason I really enjoy their facility is that if there comes a time that I physically cannot continue with the group, “Our Club House” is well equipped, with qualified leaders, that could take over the group and everything I have done can continue.

One person in particular has been very helpful, her name is Francine Morrison. She was the Patient Care Coordinator at LLS of Western PA at that time. She became the mixer to forming our cake! She helped me broaden my resources from pharmaceutical companies to healthcare providers and other resources that I would never have known, if it wasn’t for Francine!

Please run us through SG Meeting from beginning to end.
Generally we start out with my welcoming everyone. I reiterate at every meeting that I have no CLINICAL EXPERIENCE. The purpose of this meeting is to listen, speak of what has worked for us in similar circumstances, and to help member explore their options. We are to respect each member’s rights and personal decisions. The meeting is for patients, their families, and care givers. There is no cost to the meeting. At this point I have the participants introduce themselves to the group. Some people want to tell us which disease they have and what they are taking to control the condition and share other experiences. After the introductions I present one of the following
• give an update of information that I have learned from a conference
• If I have a CD from one of the conferences I will show a segment of it
• have a conference call or meeting from a medical professional
• I ask if I can help with anything until the next meeting

Generally the 1 ½ hours is up quickly. We meet bimonthly from March to November. Many of the patients travel an hour to get to the meeting.

What would you say to an aspiring Support Group Leader?
Many times this is the only option a patient has, when diagnosed with a rare disease, to learn and connect to other patients. A rare disease is not RARE when you have it! Sometimes it a lonely feeling, when you have a condition that is not common. Support Groups can help fill that void!

I have found the role of a Support Group Leader has been very rewarding. I have had patients have the disease for over 20 years and never spoken to another individual with their condition. They are so appreciative. I would say reach out to others that have formed groups, learn everything you can then run with it! Don’t look back!

Wednesday, April 15, 2015

Health activist and blogger takes on a monthlong writing challenge with a focus on essential thrombocythemia

imageDuring the month of April, blogger Lina will be participating in WEGO Health’s #hawmc. The Health Activist Writer’s Month Challenge will have her writing every day during the month of April. Themes will be based on suggestions from WEGO Health.

Follow Lina's blog to see her chronicle of living as a young woman with essential thrombocythemia.

Tuesday, March 10, 2015

2015 MPN Challenge Grant Program

The 2015 MPN Challenge is a grant program supported jointly by the MPN Research Foundation and the Leukemia & Lymphoma Society. This grant program represents an important partnership between MPNRF and LLS, who share a mission to advance the scientific understanding of MPNs and bring new treatments and the hope for a cure to patients with these rare diseases.

We hear from patients with MF, PV and ET and they have concerns about symptoms, treatment options, and quality of life, but their most pressing question is – will my disease progress, will I get MF, will I convert to AML?

The emergence of new treatments for MPN patients is encouraging, but until there is proof that these emerging treatments actually change the course of these diseases, these fears will remain. The MPNRF and LLS want to change this with a focus on new approaches towards MPN research that may change the trajectory of these diseases. We hope that independent researchers will join us in an attempt to achieve that goal.

The 2015 MPN Challenge

The goal of the 2015 MPN Challenge is to ensure that MPNs are evaluated as candidates for new transformative technologies currently being investigated for other cancers. We want to attract investigators in other fields whose research may apply to MPN research.

Why this Approach is Appropriate Now

Based on the response to the MPN Challenge in recent years, MPNRF and LLS are encouraged that ‘paradigm-shifting’ strategies identified in other areas of cancer and basic biology research can be useful in the search for MPN treatments. In 2014 alone, there have been significant advances in immunotherapy, gene editing and other technologies as applied to solid tumor and other cancers. If applied to MPNs, these new strategies, in combination with currently emerging treatments, could truly change the course of the MPNs.

Focus Areas for 2015 MPN Challenge Grants

To guide us, in November 2014, the MPN Research Foundation convened a group of scientists from both academia and industry to discuss the unmet needs in MPN research. This diverse group of current MPN Challenge grantees, academic scientists and representatives of companies currently involved in MPN treatment development held a lively discussion that resulted in the following list of focus areas for the 2015 MPN Challenge:

1. Targeting the Malignant JAK2 Clone

Research in this area will provide a better understanding of the importance of the JAK2 allele burden and mechanisms for reducing it in MPN patients, including the following areas:

• studies aimed at determining the significance of JAK2 allele burden as a diagnostic tool.
• research aimed at identifying and testing JAK inhibitors that inhibit the mutant and not the wild-type allele.
• preclinical testing of new agents that demonstrate potential to reduce the JAK2 allele burden.
• basic research and preclinical testing of agents that target the malignant stem cell specifically.

2. Application of Immuno-therapy Approaches to MPNs
This research will investigate the potential for immunotherapy or immune manipulation. Proposals for immune-therapeutic approaches to the broader spectrum of MPNs could include:

• Assessment of the potential role of chimeric antigen receptor therapy (CAR-T) to MPNs.
• Exploration of the role of immune checkpoint regulators in MPNs, e.g., CTLA-4, PD-1, PD-L
• Preclinical testing of antibodies that target the CALR mutated allele.
• Therapy targeted to inflammatory cytokines and/or cytokine receptors and their downstream effectors.
• An understanding of how to combine any of these with evolving therapies for MPN and in particular, since newly approved agents such as pan-JAK inhibitors have potential to impair immune cell activation and function, how or should they be used with immune-modulatory agents.

Proposals that have clear translational potential will be prioritized. The best proposals will include a strong collaboration between current immunotherapy experts and MPN specialists.

3. Gene Editing as Applied to MPNs.
We want to study whether CRISPR or other gene editing technologies can be applied to MPNs. Our primary objective is to make sure that MPNs are on the table as these technologies are developed. The best proposals will include a strong collaboration between current CRISPR experts and MPN specialists.

4. Additional New Mechanisms of Action.
We continually seek proposals for basic research and preclinical testing of new and innovative mechanisms of action to bring them to the point where other funding options are being directed to these new approaches.

Proposal applications are due April 1, 2015. All proposals will receive an initial review. A Scientific Peer Review Committee will meet May 29, 2015, conduct a final review and make recommendations. It is anticipated funding start date October 1, 2015.

Tuesday, February 24, 2015

Research Fuels Progress Against Cancer

Research Fuels Progress Against Cancer


Research continues to be our best defense against cancer. It improves survival and quality of life for millions of people by spurring the development of new and better ways to prevent, detect, diagnose, treat, and, increasingly, cure some of the more than 200 diseases we call cancer.


This progress against cancer is the result of the dedicated efforts of many people working together as part of the biomedical research community. These stakeholders include patients, survivors, family members and friends. Also included in this community are the clinicians and academic researchers. The biotechnology, pharmaceutical and diagnostic companies play an important role in the development of ways to diagnose, treat, detect, prevent and cure cancers. Policymakers and citizen advocates, advocacy and philanthropic organizations have an important role to play. Without continued investments in biomedical research through funding agencies like NIH and NCI, progress against cancer is in jeopardy.


Although the Foundation does not fund clinical trials directly, we have helped put a spotlight on the need for an increased focus on ET, PV and MF research. Our efforts have seen results. While fewer than 20 clinical trials for MPN treatments were conducted from 1995-2005, there have been over 750 trials since 2005.


Clinical trials give patients a chance to try new medical treatments not yet available in the marketplace. During the course of a trial, data is collected recording all observations related to lab results, the patient’s progress (or lack of progress), effectiveness, and side effects of the treatment. Clinical trials are conducted at many sites but usually they are conducted at specialty clinics or teaching medical centers.


There are 4 types or phases.


Clinical trial phases

Phase I

Phase I studies are designed to determine the best dose of a therapy and how humans process it, as well as to identity any potential toxicities. These first-in-human studies can also demonstrate early effectiveness or clinical results.


Phase II

Phase II studies determine continued effectiveness of a therapy in a particular disease or a larger group of patients, in addition to continually monitoring for adverse events or potential toxicities.


Phase III

Phase III studies are large trials designed to determine curative value as compared to standard of care (placebos are rarely used in cancer clinical studies).


Phase IV

Phase IV studies are also known as post-marketing studies. They provide additional effectiveness or “real-world” data on the therapy and are conducted after approval by the FDA.


There are many factors to consider when thinking about joining a clinical trial. There are no guarantees that the treatment being tested will be successful. Travel to a clinical trial site may be difficult and costly. The trial may involve more frequent diagnostic tests, such as a bone marrow biopsies. Participants may be asked to stop taking certain medications that would interfere with trial results. 


Whether a trial is right for you is a personal decision that should be discussed with care-givers and family members. The final decision to enroll in a trial should be considered carefully.

Tuesday, February 10, 2015

The Strength of the MPN Community

The strength of a community is determined by how well it is able to take care of itself.


How strong is the MPN community?


When you do a little research, you immediately see how vibrant this community is. There are so many MPN chat groups, advocacy organizations, Facebook pages, Twitter accounts, and forums we cannot count or list them here. People can get encouragement, information, friendship. People can also get support from organizations not just focused on MPNs. Patient Power has included MPNs in their focus. The National Organization of Rare Disorders (NORD) also provides support for MPN patients. The Leukemia and Lymphoma Society is one of our important partners.


It is the spirit and generosity of MPN patients, family and friends that enables the MPN Research Foundation to fund research that promotes medical innovations that have potentially high rewards. The MPN community is small in population, but immense in spirit and generosity.


When you read this Blog will get a snapshot of the MPN community. You may have heard that the MPN Research Foundation has helped fund every major advancement in MPN science. In the coming months this blog will provide readers with information about how our current research focus is pushing MPN Science. MPN Research Foundation leadership will be providing their perspective on the where MPN science is going and why. You will receive firsthand accounts from patients and families who are “Leading by Example” by hosting events that help raise funds and MPN awareness. We are inviting MPN patients to “Share Your Journey”. 


We also need to hear from you. We want to address the things what will be helpful for you. The only time a comment is not helpful is when there is no comment.


Want to learn more now?


Our website has an article from the New England Journal of Medicine report on randomized trial of Ruxolitinib vs phlebotomy in Hydroxyurea-resistant PV - See more at:


Did you know February 4th was designated as World Cancer Day by the United Nations. If you visited our Facebook page you would have.


Thanks for reading.


Enjoy our community.