FDA approves Amplatzer


News announcement from FDA you’ll be interested in if you’ve suffered a cryptogenic stroke from a suspected PFO and need more choice for treatment.


Update to Recent Post: Long Journey to Improve PFO Patient Voice and treatment Options for Cryptogenic Stroke

Wow, I have personally spent lots of time advocating for this important stroke/PFO patient matter over many, many years but hard work has now paid off.  The FDA announced last week the Amplatzer is now finally approved for recurrent cryptogenic stroke treatment in certain PFO patients!

Congrats and recognition for the commitment from the original team of PFO patients (formerly PFO Research Foundation in the US) that I began this important advocacy journey on with together so many years ago. Thank you!

Read the FDA Notice:

http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm527096.htm

Take look back at my FDA testimony and this PFO journey background here:

http://www.know-stroke.org/a-long-journey-to-improve-pfo-patients-voice-and-treatment-options-for-cryptogenic-stroke/

bostonfinishlinedansereau
What a Journey !
Advertisements

Stroke and Young Adult (SAYA) Program at Tufts Medical Center


Help needed to learn more about stroke and young adults.


Can you share your story?

post by David Dansereau,MSPT Know-Stroke.org

David Dansereau at Know-Stroke.org

A stroke is devastating at any age.  When you are forced to deal with a stroke at a young age, there are many additional challenges during your recovery.  From getting back your independence, restoring your identity and returning to life after this life changing event, there are many obstacles to overcome. Typical current models for treating and guiding individuals after their strokes often do not account for long-term survival and the unique recovery needs encountered by young adults that suffer a stroke.

With the help of experts in specialties across Tufts Medical Center, Vascular Neurologist Lester Y. Leung, MD hopes to make a difference in young stroke survivors lives and improve the model of care for young survivors.  Dr. Leung has built a comprehensive, longitudinal care program for Stroke and Young Adults (SAYA) to help young adult and pediatric stroke survivors navigate their lives after stroke.

The Stroke and Young Adults (SAYA) Program is built to help identify causes of your stroke, optimize prevention of future strokes, estimate your risk for recurrent stroke and late complications of stroke, and provide counseling on stroke survivorship.  Dr. Leung currently needs your help and wants to learn about your experience with stroke.

Here is a brief intro to the SAYA interview study:


Are you a stroke survivor? Did your stroke or TIA (transient ischemic attack) occur between ages 18 and 55? Dr. Lester Leung and his team at Tufts Medical Center are interviewing young and early middle age adults about their experiences with their strokes to better understand how people develop symptoms in these age ranges, how they decide to seek medical care, and how they make decisions about their health after their strokes. If you are interested in participating, please contact Dr. Leung at lleung@tuftsmedicalcenter.org. Interviews usually take about 30-45 minutes and can be done in person or over the telephone. The team is giving participants a $15 Amazon gift card as a sign of gratitude for participation in the study.

 

What do you need as a stroke survivor outside the clinic?


Outside the clinic and hospital, the SAYA Program at Tufts would like to help you connect with other stroke survivors and their families to get out of the house, share experiences, or just have some fun! They’re interested in hearing your ideas and preferences for the social/educational/support aspect of the Stroke and Young Adults (SAYA) Program at Tufts Medical Center. This program is the first and only one of its kind, and we’d like to tailor it to your interests. Would you like the events to focus on being fun, or would you like an educational or support piece built in as well? What sort of things would you like to do? Let them know here.

They’ve invited you to fill out the form SAYA Social Survey. To fill it out, visit their survey here.


Resources:

Learn more about Dr. Leung

Overview of SAYA Program at Tufts

bodyandbalanceorsickandtired

 

New American Academy of Neurology (AAN) Guidelines on PFO Closure in Cryptogenic Stroke are Discouraging


David Dansereau
David Dansereau (Know-Stroke.org)

AAN Ruling Again on P values NOT Patient Values

[In my opinion this is very discouraging news and more evidence to show there is still a great divide in how neurologists and cardiologists treat cryptogenic stroke with known PFO.]

PFO Closure Tipping Point

Despite the hard work of PFO patients (like myself) to make a difference by providing testimony and  their real life perspectives to the FDA recently, it looks like the AAN is unmoved and keeping with their same position on how to best mangage and educate patients that have had a cryptogenic stroke with confirmed  PFO.

 

Read the post of this news from TCTMD

 

First AHA/ASA Stroke Recovery and Rehabilitation Guidelines


ASA logoOn May 4th in their publication Stroke,  the The American Heart Association/American Stroke Association (AHA/ASA) for the first time issued guidelines on stroke rehabilitation and recovery.  This scientific statement on rehabilitation is the 8th set of stroke guidelines from the American Stroke Association, and these guidelines focusing on recovery are the last of the association’s recommendations for the continuum of care for stroke patients and their families.

Grade the Guidelines

Amazon5stars


How do you think the AHA/ASA did with their guidelines for stroke recovery and rehabilitation?  Do you think they hit the mark or fell short for stroke survivors and caregivers?

Give the guidelines a grade here:

 

I believe the guidelines scored a solid B (maybe minus).  Here’s my bottom line on the guidelines, and why I believe they fell short.

I just posted it to know-stroke.org. Check it out!

bodyandbalanceorsickandtired

FDA Circulatory System Devices Panel Votes to Approve Amplatzer PFO Occluder


Post by David Dansereau,MSPT

Know-Stroke.org

On May 24,2016 I provided patient testimony at the Circulatory System Device Panel at the FDA along with Bray Patrick-Lake and Peggy Mahrt of the PFO Research Foundation and several other patients who also traveled to Washington DC to share their stories.

Bray Patrick-Lake, David Dansereau,Peggy Mahrt provided patient testimony at the FDA Circulatory Device Panel for Amplatzer PFO Occluder. Photo courtesy of PFO Research Foundation

 

I wanted to share my FDA  testimony and my story of why it may finally be time to change my Facebook profile photo in today’s post on know-stroke.org

David Dansereau of Know-Stroke.org
David Dansereau of Know-Stroke.org

King Wilder, 57, never knew he had a hole in his heart until he had a stroke


 Listen to this 911 call and share Mr. Wilder’s  chilling experience of what it feels like to be having a stroke and not be able to communicate.  It was later determined that the cause of his stroke was probably caused from a PFO (patent foramen ovale), or hole in his heart.

 

As shared by The Desert Sun

 

stroke911knowstrokeorg

What a Boston Marathon Finish!


Congratulations to all the athletes that achieved their goals and completed today’s  120th Boston Marathon.  What a finish especially in the men’s wheelchair race with Marcel Hug from Switzerland finishing first again this year with a time of 1:24:01.  Hug was able to hold off ten-time champion Ernst Van Dyk of South Africa and Kurt Fearnley of Australia at the finish line.  At one point with less than 15 yards to the finish, the three racers were all side-by-side by-side.  What an effort!

If you missed it, watch this video of the finish as Van Dyk (1:24:02) and Fearnley (1:24:03) were a near photo finish and after 26.2 miles the men’s wheelchair race came down to less than a one push difference!

Here’s a  photo of the finish line of the men’s wheelchair race courtesy of CBSBoston with only 3/1oth’s of a second deciding the top three finishers.

bostonmarathonmenswheelchairdivision2016

Watch the Video!


Women’s wheelchair division winner: Tatyana McFadden finished in 1:42:16

Women’s overall race winner: Atsede Baysa of Ethiopia with a time of 2:29:18

Men’s overall race winner: Lemi Berhanu Hayle of Ethiopia with a time of 2:12:45


Maybe next year?
Maybe next year?