kls f oundation 2015 i nternational c onference july 19, 2015 atlanta
TRANSCRIPT
KLS FOUNDATION 2015 INTERNATIONAL CONFERENCE
July 19, 2015Atlanta
KLS Patient Perspective And Why It’s Important
to Become Involved
Alanna Wong, KLS Foundation Board Member-Social Media
Born in Seattle, WA – Happy and Healthy Life
I WENT FROM THAT HAPPY, CAREFREE LIFE TO LIVING MY TEENAGE YEARS IN CONFUSION…
SEARCHING FOR ANSWERSOUTWARD BOUND
I MADE IT THROUGH 30 NIGHTS OF WILDERNESS LIVING…
MY CLASSIC “KLS” SHELTER
MY PURPOSE IN SHARING MY STORY
•Being open and honest about my condition…
•Sharing my experience…•If it is happening to me ….•I want the outcomes for KLSers to
improve.•Too long to get a KLS diagnosis. •Need to improve care for patients.
THE GOOD NEWS
For many, KLS does improve and eventually
goes away!
WHAT DO WE NEED?
•Those of us with KLS need:▫Acceptance▫Understanding▫Acknowledgement, and▫Support
HOW DO I SUPPORT THE KLSER?
•Acknowledgement•Short visits•Doctor appointments•Listen•Remember sensitivities•Acceptance•Meals/groceries•Send email, card, or text message•Welcome the KLSer back into life
WHY GET INVOLVED IN THE KLSF
•Purpose and meaning•Make a difference•Help others•Build skillsets
How Can Being Involved In The KLSF Benefit You?
▫Working with a team of people▫Work ethic▫Organizational skills▫Learn to Adapt ▫Learn flexibility▫Learn how to plan▫Learn creativity▫Mentorship
MY FEARS OF BECOMING INVOLVED
•What if I go into an episode? •What can I contribute?•Will my ideas heard?
Tips to become involved with the KLSF
• Share your skill-sets with the Foundation. KLSF email: [email protected]
• Being featured by the media? Ask journalist to share KLSF website link: www.klsfoundation.org
• Fund-raise for the KLS Foundation. • On Special Occasions ask for donations to KLSF• Start a Walkathon • Run a Marathon (Dani Farber just raised $2,000 for
the KLSF by running a Marathon).• Sell baked goods at event • Host a sporting event• Host a silent auction
Successes Since Being Involved With KLSF
•Social Media – Facebook Group, Twitter, Google Plus, YouTube.
•Website – Brochure, Patient Handout, Encouragement Card Request.
KLS RESOURCES
•KLS Foundation Website: http://www.klsfoundation.org•KLS Guidebook: http://alannawonglife.com/shop/klsguidebook/ •KLS Support Group:https://www.facebook.com/groups/KLSFoundation