CLLPAG Niagara Falls Conference and Survey

Paul Henderson and Me

Every Canadian knows Paul Henderson. He is the hockey player who scored the most famous iconic winning goal ever, finding the back of the net in the dying seconds of the Summit Series in 1972 against the Russians, a defining event in Canadian identity.  For non Canadians, think Olympic Gold, the Word Cup, Wimbledon, the Masters, the SuperBowl and the World Series all wrapped into one. His goal surpassed all that. Turns out Paul is a sweet guy who is not shy about using his fame to help others who share his diagnosis of CLL. We met at the CLLPAG conference.

The CLLPAG conference in Niagara Falls was wonderful in so many ways, and not just for meeting a hockey idol.

First it was great to see so many old friends and make new ones in the CLL community.

As I have said before, if it wasn't for the downside, everyone would want cancer.

People may have left with different levels of understanding of their disease, but everyone left with a clear and strong sense that they were not in this alone. It was an enormous group hug for everyone involved.

That said, it was not just about feeling good. The world class and world wide faculty presented both the medical basics and the latest for a crowd of over 200 that included many newbies and more than a few pros.

Patients and patient advocates addressed the cold and complex psychological, social, financial, and political realities of the disease and its cost in the broadest sense of the word.

Still, the overall sense was hopeful. The CLL world is changing very fast, for the better.

Thanks to Deborah and all the volunteers and faculty who all donated their time. Amazing success.

I will leave for my next post an update on the promising new science, my vision for the future, and a reprise of my own presentation. Actually, that will take a few posts.

Before that I need your help.

As part of an effort to bring together an more informed and participatory patient group, I am surveying fellow cancer patients and their caregivers  about what they would want on their smart phone or IPAD or computer in an app to have with them at all times when dealing with their malignancy.

So please, please complete a very brief online form at http://www.virtualcancerbuddy.com/ if you didn't do one already at the conference. You don't need to have been to CLLPAG or even have CLL to share your needs. You just need to be a cancer patient or a caregiver of a cancer patient.

We are truly and eternally all in this together.

CLL SUPPORT GROUP IN ORANGE COUNTY

This is a letter I recently posted on CLL listserves. 

Our next meeting is this Tuesday in Irvine. If you think you might want to join us, please read the letter and email me @ bkoffmanMD@gmail.com 

Friends,

The internet lists provide a great service, but at times the real must replace the virtual world.

That is why a small group of us meet at 7 PM on the second Tuesday of nearly every month. We mostly live between Newport Beach and Yorba Linda, CA. but we are not picky about zip codes.

The meetings are rotated between our homes and usually last about 2 hours, Though some new CLL studies or news may be presented, the focus is really to share the latest in our personal medical history, and support each other. The meetings are friendly, very casual and very candid. The group is not political or activist. We are a pretty pure and simple support group.

While we believe it is important to keep the group small, we are happy to see if a few local members of the list might be interested in joining us.

Please email me with contact information. I or another group member will get back to you, On the chance, we get an overwhelming response, we may need to say no to some of you. (Maybe we could scalp tickets like TICKETMASTER does). Just kidding. There is no costs involved other than some refreshments if you choose to serve as host.

I can't say how important and helpful the group has been for me in my struggles with CLL. I hope you might consider whether joining us would make sense for you.

Be well

Brian