We are international

Recently in Yelak Biru Category

Learning at ASH How to Travel from Fear to Hope!

| No Comments
YelakBiruBlog.pngNew Orleans, LA December 8, 2013--Continuing to give a Support Group Leader's perspective from the 55th Annual Meeting and Exposition of the American Society of Hematology (ASH) in New Orleans... 
At the end of a long day when I got to the hotel on Friday night, Anderson Cooper's special "To Heaven and Back" was showing on CNN. Weather you believe in an "after life" or are religious, the message to me was don't let your situational fear control your actions. 
On Saturday evening on CNN Heroes, whether it is helping kids having to dodge bullets for the rest of their lives is their life, helping foster kids overcome the fear of loosing their only prized possession - a doll shared among foster sisters,  or verbally disarming a fearful gunman that can potentially kill dozens of kids, HERO after HERO was helping others overcome their fears. 
During a hosted lunch on Saturday, I had the opportunity of listening to Erik Wahl, a graffiti artist turned motivational speaker. Erik artistically walked everyone through the principle of why we can't be innovative operating from a position of fear, and how operational efficiency WILL NOT lead to innovative myeloma treatment approaches. 
He explained that you have to Focus, Commit and Adopt in order to transition from fear to hope.
YelakBlog1.jpgDuring Saturday night's International Myeloma Foundation (IMF) Brian D. Novis Senior & Junior Research Grant Awards Reception, Dr. Brian G.M. Durie, President and Co-Founder of the IMF, said the goal is to help patients and their families to transition from Fear to Hope
Jack Aiello, a 19-year myeloma patient who spreads and shares hope with others through his leadership of a support group and through international advocacy, shared his story of hope at the Awards Reception. Myeloma is a cancer on the move, according to Jack. In order to continue to have hope, patients need to stay on top of their choices. In this day and age where our world is connected and continually shrinking, there are many ways of being able to do that. 
What has impressed me most so far, among many things,  is the accessibility of these world-renowned doctors and researchers that have dedicated their life to myeloma. We were able to have a one-on-one discussion with Dr. Phillip McCarthy on the ASH exhibit halls, Dr. Kenneth C. Anderson and Dr. Robert Kyle  were able to attend and spend time with patients and support group leaders at the IMF Grant Reception. As always, Dr. Brian G.M. Durie is accessible not only through ASH-related events but, also through IMF's Hotline at 1.800.452.CURE (2873) or TheIMF@myeloma.org
One of the things I am observing evolve from year to year at these ASH conferences is increased collaboration by myeloma centers and doctors. This , I believe is driven by trust.  Trust in this highly connected and data-driven world, as Erik put it, is the currency of choice. 
More to come.
Sharing the Hope. 
Yelak from North Texas Myeloma Support Group

Inspiring Purpose, Measuring Performance!

| No Comments

Thursday we heard the news of Nelson Mandela's passing. Not only was Mandela a survivor but he was also a fighter - just like myeloma patients. Mandela didn't embark on this life-long fight for his life and the freedom of South Africans and the teaching of forgiveness by himself. As with any struggle --  political, social, personal, financial or medical, a lot of people that didn't get to benefit directly from his success invested time, money, effort and other hard and intangible capital. But, Mandela inspired purpose. 

am hoping the 800+ medical practitioners that attended Friday's IMF Satellite Symposium would be inspired by the thousands of myeloma patients, families, caregivers and extended families, present and past, to dedicate their practice, research and $$ to finding a better treatment option for myeloma patients. I would be good with a Cure too! 

During last year's ASH, #ASH12, I heard Dr. Jesus San Miguel say "...compared to other blood cancers, myeloma is about 10 years behind in clinical and laboratory research." That may be the reason we  - medical practitioners, patients, caregivers, support group leaders - are asking the same questions that were asked when I first attended ASH many years ago and similar questions that were asked last year. 

This is not to say that the life expectancy, treatment options, interest and research for looking at managing myeloma differently in the last several years hasn't increased. There are hundreds of abstracts, poster sessions and oral presentations at this year's ASH that talk about myeloma. Global collaboration seems to have increased exponentially through advocacy and organizations like IMF being able to break global barriers. Drugs in the pipelines are increasing. Buzz around the Black Swan Research Initiative® continues to grow. Friday, Onyx and IMF announced a major collaboration effort to significantly advance and accelerate BSRI®. 

There are several dozen #ASH13 presentations related to BSRI. Specifically around MRD-Zero (minimal residual disease-zero). In my non-medical opinion, the benefit of this type of research will enable researchers to not just compare drug outcome with other "standard of care" drugs, but, inspire them to strive for something breakthrough. I am ready for myeloma patients and families struggling to balance quality of life with survival, side effects with response, etc. to start going beyond the statistics and the numbers. I am hoping BSRI is the first step towards that individualized treatment. 

Stay tuned for more in the next few days as the IMF Social Media team reports from ASH13 in New Orleans. 

Sharing the Hope!

Yelak from North Texas Myeloma Support Group