K K

Tampa Bay | The Weiss Guys

Hi. 

This year I am asking for help. Everyone is always- "Just ask for help!" Ok. I am. Will you help? I am asking that you personally send my fundraising page to people in your life. Family, friends, coworkers- whomever you want. Even if you send it to 20 people and I end up with $10... that is an extra $10!! Please spread the word. Use Facebook? Or an email? Doesn't matter. Just share. Share. Share. Share. 

And now for a longwinded rant that I should edit, but there is just SO much to say!!

Thank you for visiting my personal awareness & fundraising page! You know the deal. I dislike doing this but the MGFA is the only national volunteer health agency in the United States dedicated solely to myasthenia gravis.  My neurologist is on their board of directors & keeps them in line. Last year you helped me raise $3,765! Think we can do better this year? My goal to raise by the end of 2018 (fundraising can go past the walk day) is $4000. If you are curious about where your money is going... check out the MGFA financial reports and audits HERE! Last year my team, Weiss Guys, raised $9,141 and the Tampa Bay walk raised $25,287... THANK YOU!!

MGFA is committed to finding a cure, improving treatment options, providing information and support to people with myasthenia gravis and closely related disorders through research, education, community programs, and advocacy. The Tampa Bay MG walk will be on Saturday, March 10th - more info CLICK HERE. You do not need to attend the walk to donate!

Please help me reach my goal and spread awareness. If you can't pledge now, this page will be available year round to accept donations. Interested in other ways you can help?

  • Spread the word! Share a link to this page via email, Facebook, Twitter, Instagram, Snapchat, or whatever the kids are using these days. When you share, people I don't know donate. EVERY TIME. Even more important to me- awareness is spread. Most doctors don't understand, know how to properly diagnose or treat myasthenia gravis. Awareness is vital for the myasthenia community!
  • Start  your own fundraising with a virtual walk registration or with a walk near you!
  • Would your company be interested in being walk sponsor? Local and national options are available! CLICK HERE for more information on sponsorship.
  • Would your workplace, congregation, or organization be interested in fundraising? Remember fundraising can go on ALL YEAR at anytime that works for your group.
  • If you can, donate blood/plasma or organize a blood donation day at your workplace, congregation, or among friends. One of the medications I receive is made from antibodies that are extracted from donated blood/plasma. It is called IVIG. It takes 1000+ donations per batch to make IVIG. I receive it as an infusion every 3 weeks.
  • Want to help but unsure of what you can do? Contact me! Happy to discuss options or help you organize something.
  • Stay awesome. If you are reading this far- you are an awesome person so keep it up!

To learn more about MG or the MGFA and the work they do, visit www.myasthenia.org Together we can make a difference!

Personal MG rant... aka why I pester you about awareness and bother to put my personal medical information all over the internet...

I started typing this as "my story" but mine is the same as so many- diagnosis took over a year... this round... if I look back I've had symptoms since the early 90's when I was in high school. Most of my doctors have no idea what they are doing in regard to MG and I am so grateful Dr Weiss that actually knows what he is doing (even if I want him to do it faster sometimes!) I found Dr Weiss through the MGFA website. Even living in a big city like Tampa, I drive 45min to St Pete to see Dr Weiss due to him specializing in MG.

Myasthenia gravis management is tricky. None of the meds used in treatment were designed with MG in mind.A lot of these meds take weeks to months to kick in- after the weeks or months to find the right dosage. Many common medications such as antibiotics can cause rapidly severe & life threatening symptoms. This in part why the MGFA supports research into new treatment options. The meds I currently take:

  • Mestinon. I take the syrup 6-8 times per day, a single bottle retails for over $1000/bottle. It was designed by the military for soldiers prior to exposure to nerve gas to increase survival. It was grandfathered in by the FDA to manage MG symptoms but does nothing to prevent antibody production or disease process. If you have Netflix, you can watch the series "Dirty Money" about the company that makes liquid mestinon,  Valeant, episode 3 entitled "Drug Short". While some people can take a cheaper generic pill, the liquid does not have a generic. I cannot take the pill as my dose is not available in pill form. 
  • IVIG (intravenous immunoglobulin). I get an infusion every 3 weeks, retail for each infusion is $16-18K. Originally made for people with immune deficiencies.

MG is an autoimmune form of muscular dystrophy. In MG, your voluntary muscles get weaker the more you use them. MG muscles can get so weak they literally stop functioning completely. Voluntary muscles are our arms, legs etc... but voluntary muscles are also chewing, swallowing, breathing... the gravis in myasthenia gravis does stand for grave- for death. Choking and inability to breathe can cause death. People with MG can choke on their own saliva- even in their sleep. People with MG can go into a myasthenic crisis- at that point they need to be intubated and placed on a ventilator. The ventilator breathes for them until their muscles have rested enough/meds are sorted and their body can work independently again. If they are lucky. People sometimes don't make it to the hospital quick enough. Also many doctors don't understand how fast someone with MG can stop breathing. Because these meds we borrow from other illnesses often get people to a point where they are mostly breathing, mostly eating, and mostly managing daily tasks such as bathing- many doctors forget the graves part of myasthenia. They forget giving us the wrong medication (often common antibiotics) can send us into crisis within minutes. As a rare disease there are not enough of us for pharmaceutical companies to make a profit (without hiking our med prices up to ridiculous amounts). Most of us don't "look sick." Most of us learn to manage our energy so when you see us, we seem ok- cause you don't see the rest it took to get us dressed and out of the house or the rest we'll need once we get home. You don't see the nights where we can't brush our teeth cause we can't lift even an electric toothbrush. 

If you read stories about MG and are inspired- be inspired to do something. Please don't just think about how happy you are it isn't you. Help spread awareness. Help the MGFA educate doctors. Help the MGFA educate people living with MG. Help the MGFA support research into treatments and possible cures. Help the MGFA provide support groups for MG.

Here I am, asking for help. I think I have decided my MG slogan is "don't forget the G" as in, don't forget the Gravis in Myasthenia Gravis. I have found amazing support online and I have been heartbroken repeatedly as I log in and find people are in crisis or have passed away. Stories from people begging their doctors for help- sometimes as they live in a remote area and specialists are not available. Other times they live in larger cities and still can't find proper care. I finally have a good doctor. I have amazing support systems. Help me use my experience and voice to speak up for those that are literally too weak to speak. Awareness of MG is key. Thank you for your help in spreading awareness and working towards a world without Myasthenia Gravis.

Did you read all that? High five! 



Raised: $5,180
Goal: $4,000
100 percent raised

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Rank:  
#14  National 
#1  Local

Thank you donors
Paul Rogers : $250
Douglas Pruett : $100
Marilyn Geary : $100
Good luck Karen
Sherri Anderson
Sorry we are so late this year. Love Karter, Eric and Kooper
Katherine Glover : $25
Much love to you Karen!
Jeanne McGovern : $250
ROGER AND JANICE CULLINANE : $100
Karen, This is a wonderful cause to support. Best of luck to you.
Anonymous
Susan & William Costantini : $100
Keep truckin’ Karen! Good luck & God bless you, Susan & Bill
Pamela Graber : $100
Jon Moorehead : $100
Best of luck in walk & leading others to learn about this research!
Andrew Norcross : $50
good luck!!!
Karen Putney : $100
Melanie Levi
Susan Boikess
Go, Karen, Go!!!
Zalary Young
<3!
Anonymous : $100
You are a star Karen!
Nil Wilkins : $100
Anonymous : $50
Good luck in reaching your goal.
Jean Chick : $500
Good luck with your fundraising!
Arthur Geary : $150
Karen Rehn : $150
We love you!! Aunt K1 and Uncle Ralph
Jeff Brawer : $20
George Eccles : $50
Good luck me, Eve, Dunluce, Tabby and Bulldog Boris!
Leo & Patti Kessel
Holly and Jeff Munsie : $50
We are happy to support you Karen! Best of luck on your fundraising walk!
Shari Feldman : $35
Seth Werkheiser : $15
Hooray!
Michelle Fletcher : $100
So happy to support you and valuable research! I love you!
Peter Bauck : $50
Ona Heidel Schmidt
Happy to help Karen! <3 Ona
Steve & Patty Coulter : $200
To a successful walk! We love you Karen!!
Patti and Leo Kessel : $500
We are very proud of you. Love Patti and Dad
Jana Miller : $25
Love you!
Theodore Bluey : $300
Nicole Kibert Basler
Best wishes for the best MG Walk yet. We love you! - Kibert Basler Family
The Weiss Guys
Jessica Simmerman - $4363 raised
Allan Weiss - $500 raised
Amanda Smolen - $0 raised
Ashley Cochal - $0 raised
Ben Staley - $100 raised
Chad Staley - $0 raised
Dan Staley - $0 raised
Dorrie Staley - $100 raised
Dottie Strickland - $0 raised
Ella Gunst - $1455 raised
Eueke Clifford - $0 raised
Janice Smolen - $0 raised
Jeremy Strickland - $0 raised
Jerry Brown - $100 raised
Jody Nader - $0 raised
Johanna Isdahl - $100 raised
John Cochal - $0 raised
K K - $5180 raised
Kathy Diehl - $0 raised
Katie Smolen - $0 raised
Kevin Diehl - $0 raised
Kevin Clifford - $50 raised
Mike Kuechenmeister - $500 raised
Ronald Book - $100 raised
Sarah Weiss - $0 raised
Suzanne Shinnick - $275 raised
Tim Strickland - $0 raised
Will Roberts - $0 raised

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