kls f oundation 2015 i nternational c onference july 19, 2015 atlanta

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: info@klsfoundation.org

• 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