Showing posts with label University of Ottawa. Show all posts
Showing posts with label University of Ottawa. Show all posts

Tuesday, October 23, 2018

A Visit to the Molecular Genetics and Cardiac Regeneration Laboratory





So honored to be pictured here with the Molecular Genetics and
Cardiac Regeneration Laboratory researchers. Dr. Mona Nemer is 6th from the right

We met Dr. Mona Nemer initially through a phone call in December of 2016. As she described her work that day, at some point tears began to flow from my eyes. After searching for so long, someone was describing the BAV experience, in both individuals and families, just the way it happens, in my own family and so many others. Without minimizing, without trivializing, Dr. Nemer so fully described what I so painfully know to be true - the unpredictable and sometimes deadly experiences in BAV families.

Dr. Nemer is not a "people" doctor. She is a research scientist. And those individuals and families she talked about so movingly were not human beings, they were mice. Yes, mice families, but oh so much like my own! Families with bicuspid aortic valves and the other complications that can go with it.

I told my husband about these mice - about their two leaflet heart valves, their aortic aneurysms, their dissections, and their high blood pressure! We felt such a kinship to them. From that day onward, we had hope that these researchers would learn even more from these wonderful creatures, things that could help human families like ours and the many millions scattered around the world. It was a hope my husband remembered through out what became the last weeks and days of his life.

I dreamed of just spending a little time in this laboratory, meeting these talented researchers, and seeing these wonderful mice. In September, 2018, my dream came true! It was thrilling to walk into that very special laboratory at last - a place so focused on the challenges of BAV!


Dr. Lara Gharibeh and Dr. Alice Lau sit next to one another in the lab,
 such wonderful collaboration as they search for answers about BAV!

So special for me to look through this microscope that
 they use to study BAV in mice hearts!


Front left, Dr. Bernard Jasmin, Dean of the Faculty of Medicine, Front right, Dr. Mona Nemer
Back far right, Dr. Daniel Figeys, Chair of Dept of Biochemistry, Microbiology, & Immunology
The motto of the Medical School "We teach to heal" is on the wall in French and English

This laboratory is located at the University of Ottawa, housed within the Department of Biochemistry, Microbiology, and Immunology within the Faculty of Medicine. We were warmly welcomed by the Dean of Medicine, Dr. Bernard Jasmin, along with others, spending time getting acquainted before  a very special afternoon of research presentations by three members of the lab: Dr. Lara Gharibeh, Dr. Alice Lau, and Dr. Yuejuan Xu.

In September 2017, the Bicuspid Aortic Foundation provided a scholarship to Lara Gharibeh in support of her research on BAV. This is the paper that she published based on that work:
GATA6 Regulates Aortic Valve Remodeling, and Its Haploinsufficiency Leads to R-L Type Bicuspid Aortic Valve   The full paper is freely available at that link and speaks to the excellent, meticulous work done in this laboratory.

A few years ago, I wrote about BAV families being strangers, unrecognized and misunderstood, when they seek help.   Bicuspid Aortic Valve Families - Strangers in Two Worlds?  At long last, this first day and on the following days there in Ottawa, as a representative of BAV families, I was so warmly welcomed and understood by those who are working very diligently to understand and help us. It was a wonderful feeling, beyond description!! I have that warm glow with me still. I want to thank these researchers once again for what they are doing to help us.

Thank you for recognizing the challenge
and caring about those with BAV,
for seeking answers to the mysteries,
and in doing so,
Creating a Climate of Hope!

~Arlys Velebir
                           Bicuspid Aortic Foundation





Saturday, September 1, 2018

Unlocking the Mysteries - BAV and TAD September Awareness 2018


Still struggling with mysteries of the heart
  202 years since its invention,
 the stethoscope remains an important device
 for probing mysteries of the heart
   
"The practice of medicine is the struggle to unlock the mysteries within the body, to understand them in the hope of applying treatments to save life...."

This is my very own definition for the practice of medicine, reflective of the many years I have lived with struggling to understand and thwart BAV and TAD. I said this to a beloved cardiologist last year. He has been practicing for a very long time, and he did not disagree with me.

No one will ever convince me it is not a struggle. On the surface, what is known today was known 100 years ago. Do we have treatments now? Yes, but there is such a struggle to know what is happening, when and how to apply treatment, and will the treatment work . . . .?!

Too many times, there is no clear understanding. 
Too many times, there is suffering, injury, death. 

I was with one of our BAF board members recently for a consult with a new doctor. He remarked with astonishment that her medical records are a saga that rivals the novel War and Peace! So many different specialties, all searching for keys to understand her. We can only hope this particular specialist will be successful with his chapter of her story!

As September begins, I am looking forward to traveling to the University of Ottawa later this month, to visit the  Molecular Genetics and Cardiac Regeneration Laboratory . Dedicated to studying congenital heart defects, about half of their work is dedicated to unlocking the mysteries surrounding bicuspid aortic valves. They are co-located with the University's medical school and the Ottawa hospital. I am so grateful to be welcomed by them in our shared quest, our search for answers.

I invite you to share my visit to the University of Ottawa. Through this blog, I will have pictures, information, and stories to share. One thing I already know, I will be with those intensely focused on unlocking mysteries about the hearts and entire bodies of those born with BAV, and their trileaflet aortic valve family members too. I will be with those who understand the quest, the struggle, and are up for the challenge of this fight for life.

This September, 
there is no quest more worthy,
 no struggle more worthwhile,
 than seeking to unlock the mysteries
of BAV and TAD in our families,
Creating a Climate of Hope,
~ Arlys Velebir
Bicuspid Aortic Foundation


Saturday, December 30, 2017

Questions in Search of Answers in 2018

Questions Without Answers
Why do some BAVers tear/rupture their aorta?
Why do some BAVers have aneurysms that do not tear or rupture?
Why are there BAV/aneurysm and  TAV/aneurysm in the same family?
Why do some BAVs calcify and narrow?
Why do some BAVs leak?
Why do some BAVs do both: calcify/narrow and leak?
Why do BAVers get infection (endocarditis) in their hearts? 
Why do some BAVers develop blood pressure issues?
Why are many BAVers so athletic and energetic?
Why do many BAVers (and their TAVer family members) have "delicate tissue", joints prone to injury, "bad eyes", and other issues through out their bodies?
Why can't my doctor tell me ......?
Why............?
Why............?
Why............?

There are so many unanswered questions when it comes to the individualized care that each person with BAV and their blood relatives should have.

As this year comes to a close, we invite you to support our search for answers. Many of those answers may be found in the mice families being studied at the University of Ottawa. With your help, the Bicuspid Aortic Foundation wishes to continue to support this vital work. Online donations through Razoo may be made here. 


Thank you for joining us in our search for answers.

Best wishes in 2018,
~ Arlys Velebir
                       Bicuspid Aortic Foundation