Kendra Gottsleben



Rare Fashionista


Check out my most recent article I wrote for Rare Disease Report.


E32 – Kendra Gottsleben – When Life Gives You Lemons


Last year I had the great honor of being interviewed by Mike Berkson and Tim Wamback from Handicap This Productions.  They had recently started their Podcast endeavor and asked if I would share my story.  It is always fun to talk with these two guys.  I have had many amazing opportunities through the years to share my journey and feel so blessed.  Speaking with Mike and Tim is just another one of those incredible opportunities.  Click here to give the interview a listen!


Canadian MPS VI Patient Symposium


This past weekend I traveled with my best friend from college to Toronto, Canada for a speaking engagement.  We were there to attend the first ever Canadian MPS VI Patient Symposium, held by The Isaac Foundation.  For me, this particular opportunity was another one for the books!


For years I have admired Andrew McFadyen and The Isaac Foundation for all they have done and strive to do for Canadian families dealing with MPS.  One of my bucket-list items was to one day meet the McFadyen family, and let them know how incredible I think they are.  It is people like Andrew that create positive changes in our world, and inspire others to join in the fight.  His passion and dedication is infectious — you can’t help but want to do more when you’re around him.  Naturally, when I received a message from Andrew asking me to speak about my journey with MPS, I ecstatically said yes!


Currently, there are only 14 known cases of MPS VI in Canada. At this event, I was given the opportunity to speak to several parents of the young children with MPS VI.  I focused my presentation on how I haven’t let my condition stop me from reaching my dreams.  For me, it’s an unbelievable feeling to know that I can help them see that an MPS diagnosis doesn’t mean the end of the world.  While patients with MPS may face obstacles that others may not, there is so much they can do and achieve!


I had an absolutely amazing time, and I am so grateful for the honor given to me to speak at the Canadian MPS VI Patient Symposium.  Once again, I offer a heartfelt thank-you to Andrew and The Isaac Foundation!


Runway of Dreams


A couple of months ago I was asked to be an ambassador for Runway of Dreams and with that I got the awesome opportunity to write a blog posting for them.  I wrote about "The Empowerment of Fashion for those with Disabilities."

I feel so honored to be apart of this wonderful team and organization.  I love fashion, style, and now I am achieving another dream of mine working with them!


10th Annual WORLD Symposium


I want to thank the amazing geneticists who work so diligent in advance therapies for all rare disorders! Speaking at the WORLD Symposium is just another wonderful opportunities I have been able to experience as a result of having MPS VI. I will forever remember the amazing feeling I had being asked and while speaking on stage! I am so happy that so many people enjoyed the presentations. It's an honor and blessing to have so many amazing people on our side as we live our life with MPS! I will be forever grateful!  Click here to view the video!

Remember to Always Make the BEST Lemonade Possible in Life!

EmBe Leadership Program


Today EmBe released in the Argus Leader: Women chosen for EmBe leadership program.  I am really looking forward to January when it all begins!


Website Official!



Hope everyone likes the website I created!  I decided to make my book writing and speaking journey more official with a website.  I hope to be able to blog often on here, when time allows.  This will be my second blog of my life.  I have been blogging for a couple of years now, but on blogspot.  If you want to check my other hlog out click here