Peter DeNardis' Walk for WM

On August 28th, during the 2020 IWMF Virtual Educational Forum, people from around the world will join together to raise awareness and support for Waldenstrom's macroglobulinemia (a rare, incurable form of non-Hodgkin's lymphoma cancer).   Funds raised during the Walk for Waldenstrom's will directly support the mission of the IWMF: To support and educate everyone affected by Waldenstrom’s macroglobulinemia which we advance the search for a cure and help us achieve our vision of a World without WM.  Imagine what that would mean to your friend or family member!

I pledge that my wife and I will walk (in downtown Pittsburgh, PA) one mile per thousand dollars donated on my behalf, and will try to document that journey with photos and videos – so, the more dollars that are donated, the more exercise we get and the better will be everyone’s health in the end!

In case you’re wondering – why the IWMF: My journey with the rare, incurable form of non-Hodgkin's Lymphoma called Waldenstrom's macroglobulinemia (WM for short) began back in 2003.  At the time, I was married (still am!) and my children were 16, 14, and 7 respectively.  My wife and I were told that I had 6 years left to live.  Rather than putting our affairs in order, we chose to do a bit of research and came upon the IWMF.  We received a great deal of valuable information from them, and took heart in their guidance that there were other factors that also affect life expectancy, and that many people were still alive after 20 years.  

I was first treated in 2003/2004 with “heavy duty” chemotherapy, and had a serious relapse in 2009/2010 that required more “heavy duty” chemo and radiation.  Since then, all markers in my peripheral blood and bone marrow pointed to a complete remission, and we thought perhaps a rare "cure" was in the making.  But, in November, 2016, a rare manifestation of a tumor on my sciatic nerve appeared, requiring surgery and radiation.  And, as if that wasn’t enough, my wife, Terri, in 2017 was diagnosed with a related pre-cursor condition (monoclonal gammopathy of renal significance), was treated, and is now in remission.  So, she’s in remission hopefully for a very, very long time, and I'm back in survivorship and treatment mode - facing periodic PET scans to check for tumor recurrences, and taking a once a day immunotherapy pill that is much less toxic (developed in part due to advocacy and research funding provided by the IWMF) - and we're again unsure of the future.  I'm fortunate to have been able to enjoy my family for 16+ years after diagnosis - but naturally I want more...for myself, for my wife and family, and for others affected by this rare, incurable form of cancer!  

The IWMF has meant so much to me and to my wife, and has provided so much guidance and support to us, that I felt I just had to "pay it forward" and volunteer my skills - I've been their discussion list manager since 2006, and an active volunteer board member since 2008.  While it's taken up a lot of my free time, it's been a labor of love, and a personal mission to do whatever I could to help the IWMF provide comfort and guidance to other WM patients and caregivers, and to work towards finding better treatments and a cure for this disease.  

I cannot stress strongly enough how important the organization is to all of us affected by the disease – it’s the only world-wide organization devoted specifically to supporting and educating patients and caregivers, and to funding research that will lead to better treatments and a cure for WM – and I want to be there when that cure happens!

Any donation, whether large or small would mean so very, very much to me personally, and to my immediate family – and to my “extend family” of WM patients, caregivers, healthcare professionals, and researchers around the world!

PS – don’t forget - I pledge that my wife and I will walk one mile per thousand dollars donated on my behalf - so, the more dollars that are donated, the more exercise we get and the better will be everyone’s health in the end!