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The Myocarditis Foundation’s Family Support Meeting and Researcher Workshop

On September 22nd and 23rd, the Myocarditis Foundation (MF) held its first Family Support Meeting and Researcher Workshop in Orlando, Florida.  The Myocarditis Foundation held these two events in conjunction with the Heart Failure Society of America’s (HFSA) Annual Scientific Meeting.  HFSA had invited the Myocarditis Foundation to co-host a myocarditis symposium with experts from around the world coming together to share the most recent findings in the field of myocarditis.  Being that there would be so many members of the Myocarditis Foundation’s Board of Directors in attendance of HFSA’s meeting, the MF decided to simultaneously hold meetings for the families and researchers of the Myocarditis Foundation.

The Myocarditis Foundation’s events started on the evening of the 22nd, where a Welcome Reception was held at Maggiano’s Italian Restaurant in Orlando, FL.  Families, researchers, and board members came together to meet one another and share stories in a casual atmosphere.

Top: V. Lundy, A. Barnes, D. Winans, A. Winans Bottom: B. Wagner, and K. Murphy

Top: V. Lundy, A. Barnes, D. Winans, A. Winans
Bottom: B. Wagner, and K. Murphy

 

Candace Moose, Founder and Executive Director Emeritus, gave a talk highlighting the history of the Myocarditis Foundation and its major accomplishments over the years.  An anonymous donor graciously paid for the delicious food, adding to a memorable evening with so many families and patients affected by myocarditis and those who have dedicated their professional lives to fighting this disease.

Top: C. Moose, K. Hymowitz Bottom: J. Moose, S. Hall, C. Sweet, K. Stephens, , and S. Adair

Top: C. Moose, K. Hymowitz
Bottom: J. Moose, S. Hall, C. Sweet, K. Stephens, , and S. Adair

 

At 8:00 the next morning, the Family Support Meeting commenced along with the Researcher Workshop.  The Myocarditis Foundation’s Family Support Meeting’s goals were to provide information and answer questions a safe, open atmosphere for families and patients and also to allow for families of loved ones and survivors to share their stories.  Dr. Leslie Cooper, Dr. Lori Blauwet, Dr. Monte Willis, and Candace Moose all gave talks, followed by talks from survivors and families of loved ones: Jeff Grant, Carolyn Sweet, Kristen Stephens, and Katie Kendjorsky.  (Please click Family-Support-Meeting-Program-2013.pdf to see the detailed program of the Family Support Meeting.)

K. Stephens shares her daughter's story to those in attendence of the Family Support Meeting

K. Stephens shares her daughter’s story to those in attendance of the Family Support Meeting

 

This meeting was highly emotional, filled with tears, hugs, and smiles; but many families shared that this meeting brought “a small sense of peace” to them and their family; therefore fulfilling the goals of the Myocarditis Foundation’s Family Support Meeting.  But not only did this meeting provide families with support and information, it also allowed for these families, many of whom had long been talking trough email and Facebook, a chance to come together and meet face-to-face.  Many life-long connections were made this weekend.  As so many families know, being able to talk to others going through such difficult situations is priceless and a huge part of both the grieving and healing process of myocarditis.

Next door to the Family Support Meeting, the Myocarditis Foundation’s Researcher Workshop was being held.  The Myocarditis Foundation graciously received a grant from St. Jude Medical Foundation, which allowed for the Myocarditis Foundation to invite all of its past and present research grant recipients to attend a workshop to help them advance in their professional career while fostering a love for myocarditis research.  It is the Myocarditis Foundation’s belief that if these young research grant recipients can be offered a mentorship program along with their grant, there will be a continuous cycle of researchers and physicians dedicated to the disease myocarditis, enhancing and growing the number of professionals working to bring advancements in the field of myocarditis.

Dr. Cooper talking with the research grant recipients

Dr. Cooper talking with the research grant recipients

 

The Researcher Workshop began with presentations from grant recipients: Dr. Laure Case, Dr. Chandirasegaran Massilamany, Dr. David Marchant, and Dr. Bettina Heidecker.  Following the grant recipient talks, were talks given by Dr. Madeline Cunningham, Dr. DeLisa Fairweather, Dr. Leslie Cooper, and Lindsey Davis.  (Please click Researcher Meeting Program to see the complete program for the Researcher Workshop.)  These professional talks were aimed at offering tools, advice, and information to help these researchers succeed in the field of myocarditis research.

Following both meetings, the two groups came together to share a lunch and to continue to tell the stories of the families who’s amazing fundraisers fund the critical research the Myocarditis Foundation’s researchers complete.  By allowing the researchers to talk to the families who have been directly affected by the disease it creates an extreme personal connection to the work they do in their labs around the world and also gives the families a chance to see first-hand what their fundraising money helps to support.

Lindsey Davis, Giovanna Caccialanza, and Dr. Leslie Cooper

Lindsey Davis, Giovanna Caccialanza, and Dr. Leslie Cooper

 

Lindsey Davis, Director of the Myocarditis Foundation, also awarded certificates of appreciation to Jeff Grant for his dedication and help in founding the MF, Giovanna Caccialanza for her ongoing support and successful fundraisers in memory of her son, and to Katie Kenjorsky for her  dedication and fundraising successes in memory of her mother.

The MF hopes to hold similar meetings every year.  The location of each meeting will be dependent upon where national cardiology meetings take place.  All future events will be posted on the Myocarditis Foundation’s website.  The MF will be posting videos of these talks to the Myocarditis Foundation’s YouTube channel, so that all families affected by myocarditis can hear the expert words shared by the speakers.

The Myocarditis Foundation would like to thank all of the families, patients, researchers, speakers, and board members who were in attendance at the Orlando meetings.  Also a sincere thank you to those that continue to support the Myocarditis Foundation and to St. Jude Medical Foundation.  This was an unbelievable event that brought so much peace, understanding, and scientific knowledge to those affected by myocarditis and to those who will bring new understandings to this disease.

Posted by Myocarditis Foundation in Myocarditis News, Press Releases, Research News.

2 comments
nancymbid
nancymbid

The reason of this message is about our son, Aaron who is 16 years old.  Almost two years ago, he got very sick.  After finding him lying on the floor one day, we brought him to the emergency.  He was diagnose with the swine flu.  About a month after that, one of his lung collapsed and he was brought again to the hospital where they kept him for a week.  While he was there, Aaron noticed something wrong with his heart.  After monitoring his heart, the nurses found that there was a problem.  He was then transferred to the cardiology department at the IWK hospital in Halifax.  

  He then saw 7 different specialist and they were all saying different things.  They always reassured us in saying that they where confident that this was not related to the swine flu.  They tried different mediaction but it was making him sick.

 He was OK for the first year but, this year, his situation has gotten worse.  He started to have shortness of breath,  to get very tired and had to sleep between his courses at the college.  Sometimes, his heart would beat so fast that he could not sleep at night.  At some occasion, the shortness of breath became so severe we had to bring him to the emergency room.  Again after several routine test, the doctor reassured us that the shortness of breath was probably not related with the heart but told us he didn't know what was causing it.

 He was then transferred to the adult cardiology department in Halifax.  When we met with the specialist the first time, he was not really alarmed about the case.  He was also not sure that Aaron's heart problem would cause fatigue and shortness of breath.  He ask to have a monitor put on him for two weeks.  When he got the results, he found that there was a problem but,  for him it look not really serious.  He told us that he would try the ablation procedure.

Since May,  Aaron's condition got worse.  At one point, he started having nausea and we had to bring him to the emergency where they kept him for the night in the trauma room.

 They did the ablation 3 weeks ago.  At first, the doctor thought that the problem was in the left side.  When he started with the procedure, he saw that there was a problem on the left side.  Aaron was there 7 hours.  When he came out the doctor told us that he was not expecting  what that he found.  He told us that Aaron had an extremely rare heart disease.  He said that there were scars there and that he tried to burn some parts but, didn't think it would help the problem.  He told us that at one point, after being stimulated, the heart went into arrhythmia so bad that they had to put Aaron to sleep and shock his heart for it to come back to normal.  He told us that he had to stop because he didn't want his heart to get tired.  He didn't know if there was a problem with the left side because he did not went there.  He told us that he would ask for an urgent MRI to be done.

 We have gone for the MRI yesterday.  After seeing the doctor, he told us that they had found another problem.  There are also scars in the muscle that separates the left and right side of the heart (cardiomypitis) and this problem was even more serious than the first.He told us he was almost sure that H1N1 caused that problem and there was nothing to do about that except trying medication.  He said that the condition will probably get worse. Aaron is 6 feet and is a strong Young man.  His condition is really deteriorating and it affects his life more and more.  I thought maybe you could help. 

 We don't know what to think and do. 

Thank you so much,

 Ken & Nancy BiddingtonNew Brunswick, Canada

txvan
txvan

@nancymbid 

I am so sorry your son has had to go through all of this.   The main purpose of this foundation is to bring awareness to this disease so more patients can get diagnosed in a timely manner.   Good for you for being persistent.   Did they biopsy the heart?   I have Giant Cell Myocarditis which is caused by an autoimmune response.   It would just be a thought since it seems like he has had some continued heart damage over time instead of just a one time occurance.    Giant Cell is a type of myocarditis that can come back and there are drugs that can help keep it away.    I don't know if a biopsy would work if he isn't having activie inflamation at the moment, but it is worth at least bringing up to the doctors.