ABTA 2015 National Patient & Family Conference

I just saw that registration for the American Brain Tumor Association (ABTA) has opened registration for their annual “National Patient & Family Conference” - http://hope.abta.org/site/TR?fr_id=3300&pg=entry

 

This is a great conference for victims, caregivers, friends and families. I’ve been, I’ve presented and I’ve listened. If you go, you’ll hear great personal stories of incredibly brave brain tumor survivors and gracious caregivers. You’ll also hear about the most recent treatment news and about protocols in testing.

You’ll meet doctors and scientists and folks who live and breathe the science and treatments on a daily basis.

The conference is July 24-July 25 at the Renaissance Chicago O’Hare Suites Hotel in the U.S.

2014 American Brain Tumor Association Patient and Family Conference

I just read the email announcement of this year’s ABTA “Patient and Family” conference: http://hope.abta.org/site/TR?fr_id=3070&pg=entry   The email said “The ABTA’s annual patient and family conference is where patients, families and caregivers come together to learn more about the latest advances in brain tumor research, treatment and care.”

While that’s all true, it somehow seems to underplay the importance of the event. Having attended the event I can tell you that I didn’t understand much of it – the displays about new protocols, the layman explanations of the complexities of the diseases or event which presentation I should attend. For example, this year should I go to “Meningiomas: Update in Treatment and Care” or the session on “Low Grade Tumors: Update in Treatment and Care”? Beats me.

Somehow the breakout session on “Brain Tumor Symptom Management” with topics like …

• “Management of Fatigue and Sleep Disorders: What Every Patient Needs to Know”
• “Understanding Seizures,” and
• “Strategies for Coping with Cognitive & Personality Changes”

…all seem really important.

But when I went, the most impactful sessions were the patient presentations. The retelling of their struggles and pain and tenacity resonated at an emotional level that, without giving me false hope, told me that my feelings were valid, and felt by many others.

If you are a victim, a victim’s friend or a caregiver, take a long look at the website an program.

The 2013 ABTA "Patient & Family Conference: A Focus on Caregiving

This is a great event. I attended last year and a) learned a lot from the great presentations, b) met a bunch of courageous brain tumor victims, and c) felt like the medical community attending was incredibly supportive.

According to the email I just received, “Experts from around the country will discuss quality of life issues affecting brain tumor patients and their caregivers. Attendees will also have the opportunity to meet with ABTA-funded researchers, who will present their findings and discuss current research trends."

Conference topics include:

• The role of patients in research

• Talking with your health care team

• Symptom management

• Nutrition and wellness

• Physical therapy and exercise

• Finances, insurance and advance care planning

Here’s a link to the website: http://hope.abta.org/site/PageServer?pagename=2013_Patient_Family_Conference_Program

ABTA Patient & Family Conference Survivor Stories

You are all invited to listen to the “Stories of Courage” panel discussion moderated by Moderated by Mary Lovely, PhD, RN, CNRN, Senior Advisor, National Programs and Services, American Brain Tumor Association (gosh she has a lot of education and titles).

There are four panelists and I’m looking forward to hearing three of the four:

JoAnne G. Colucci, Parent/Caregiver/Advocate

John Kerastas, Brain Tumor Survivor

Jean Mathew, Brain Tumor Patient Brian

J. Olson, Brain Tumor Survivor & ABTA Board Member

The panel is from 10:00 – 11:15 AM in the Renaissance Ballroom of the Marriott Renaissance Chicago O’Hare Suites Hotel.

If you come, don’t be afraid to say “hi!”

ABTA Patient & Family Conference: Do Complementary Therapies Work?

Here’s another ABTA breakout session that I want to attend, Do Complementary Therapies Work?

I guess the title is a bit of a clue, i.e. “complementary” therapies. If it said something like “voodoo therapies” or “desperation therapies” I can imagine what would be said.

Having had acupuncture, I have found that it has helped me with a bum kneed.  I also felt that acupuncture helped me recover faster than I would have without it from my first operation.

As best I can tell, though, it’s not a substitute for radiation or antibiotics or chemo.

The title of the session says “acupuncture, herbs and others.” Since my sister is a Doctor of Oriental Medicine, I understand what acupuncture and herbs are.  I’m less clear on what “others” are…and am interested in what that could be.

If you interested, the session will be led by Scott Woodworth, ND from Cancer Treatment Centers of America. The session will be held on Saturday, July 28^th from 2:15 pm to 3:05 pm in the Author Room of the Marriott Renaissance Chicago O’Hare Suites Hotel.