We received countless of e-mails from people living with MS all around the world, even before we took off. These are people touched just by the idea of what we were planning on doing, and all wished we could stop in their corner of the world also. Reactions of the people with MS we flew
Besides the few illustrative quotes below, you can see two video reactions to our mission from two very active MS advocates:
You can also read three very moving letters, vivid illustrations of how MS affects people and what feelings our mission arouse:
"I wish I could fly and forget about my disease if only for a few minutes"– Lauren Roberts, wheelchair bound, California, US
"Their mission is exactly what we are trying to do, but on a much bigger scale. They are really helping patients, it's amazing! I find it fascinating … I am going to cry if I keep going …"- Lauren Parrott, 26, with MS since 16. MS advocate with audience from 70 countries, Michigan, US Watch her emotional reaction to our mission »»
Please keep my dad in mind, he has been so debilitated by MS. A short flight would make him so happy!"
My dad has been living with MS since he was 36. Back then, there were no drugs for MS in Czechoslovakia. When the drugs arrived years later, my dad was told he is to old to be given any.
My dad had been in a wheelchair for years, limiting what we could do as a family. He couldn't even make it to my sisters wedding.
What keeps him going is painting…- Andrea, Peter Jarabak's daughter. Slovakia Read the entire letter »»
"Fly for MS will help tackle this insidious disease. It's a huge endeavor, it's more than just an awareness day, or week, or month."– Vern Beachy, 46, in a wheelchair before the age of 40. Active MS advocate. Iowa, US Watch his reaction to our mission »»
"Would you please spread the word about the MS population outside of the advanced world?
Drugs in Vietnam cost 10 times the average income
I spent years to search for help but got nowhere. I'm abandoned and completely alone in this battle."- Dao Mai, 30, living with MS for 10 years, Vietnam Read her entire letter »»
"Shame you can't do an Aussie leg... Help those of us living with MS to live good lives"- Andrea Greenwood, Australia
I found your FLY MS website while I was doing a Google search for recent MS NEWS. I was moved to tears by your project and some of the things that I read on your website. I am especially grateful to the creators of your site for their candor and accuracy in describing the difficult challenges that we face living with MS. I don't often find myself thinking, "Wow, they get it! They don't have MS, but they GET IT!" I wish more people could GET IT, with "getting it." I sincerely hope that this project helps to accomplish that.
As my MS progresses, the mental, physical and emotional challenges are constantly shifting, and I am forced to regroup often. More and more, I seek to find a balance between "forging ahead in spite of" and being kinder, gentler, and less demanding of myself. This process doesn't stop – it ebbs and flows like the tides, often coming in waves as different MS symptoms sweep over me. Much like the phases of the moon affecting the ocean, I seem to experience a fluid, mercurial push and pull of denial and acceptance. Sometimes I manage to ride the wave, and sometimes it comes crashing down on me and pulls me under quite unexpectedly.
I try to remain positive and hopeful, as I come to terms with the often unpredictable, invisible, but very real challenges and limitations that MS presents. I have to admit that I don't always accept limitations gracefully or adapt easily. I'd like to believe "that's how I roll", but truth be told, often it's not. I fall short. Sometimes it is quite simply a grief-filled process and it is difficult. The presentation of MS, it's progression and prognosis, is widely variable, uncertain, and unpredictable. In my experience, there are frequently a lot of questions and sometimes there are simply no easy answers.
I know firsthand that sorting it all out and learning to cope with the changes and uncertainty of MS can be frightening. I also know that it can be challenging to care about, or care for, someone with Multiple Sclerosis. Sometimes there are misunderstandings, when others can't see how invisible symptoms, such as pain and fatigue, mood, sleep and cognitive problems affect our quality of life and/or ability to meet expectations. Personal, work, and family relationships can end up strained when our invisible symptoms are misinterpreted as lack of caring, laziness, irresponsibility, or disinterest. And sometimes, we are even harder on ourselves than those around us.
Additionally, Multiple Sclerosis is not unique in the sense that dis-ease often makes other people uncomfortable. This is especially true when people don't understand the illness or they feel powerless because they don't know how to fix it. But I don't need to be fixed. I am not broken - I have MS. I need to be supported as I learn to live with it. Sometimes, people with MS just need to know that someone cares enough to want to understand what it is like for us. When someone who doesn't have MS, takes the time to learn, or to listen, that means so much to those of us who do have it. But to have someone take it even further, by turning around and educating others . . . well, as far as I'm concerned, that's just amazing!
And so, my heartfelt thanks go out to all of you "Winged Ambassadors of Awareness and Education" at FLY MS. Your group of amazing individuals gives me new found hope that maybe there really is the possibility of widespread awareness, support, and understanding for people living with Multiple Sclerosis. It is very heartening and hopeful for me, to see such clear evidence that you don't have to "get it" to GET IT.
Maybe someday soon, people living with MS won't have to feel frustrated, and expend precious energy that just isn't there on those difficult days, trying to explain how MS is affecting us. Or, worse, we won't have to pretend that it isn't. Because, people like you care enough to explain it for us. Thank you, from the bottom of my uplifted heart.
Kathleen Kenney, Florida
Dear Mr. Floroiu,
I came across your website this morning after reading an article in WSJ about your plans to fly across 30 countries helping MS sufferers.
My dad has been living with MS since 1984. He was 36 at the time and me and my sister were 8 and 9 years old. Slovakia was part of Czechoslovakia at the time and there were no drugs for MS suffers. And when the drugs arrived a few years later my dad was told that he was too old to be given any.
My mum became his full time carer many years ago, limiting what we can and can't do as a family. I can't even remember when we last went on a holiday together or my mum had a day off with us, her daughters. He couldn't even make it to my sister's wedding.
My dad became fully home bound two years ago when he fell in the local hospital and broke his pelvic bone. He's been on a wheelchair ever since.
Additionally, my mum was diagnosed with a fractured vertebrae recently due to her constant care and lifting my dad.
One thing that keeps him going is painting. He's been taking part in an annual exhibition organized by the Czech MS Society, run in November. Unfortunately, he's never been able to visit. The logistics are just too difficult for any of us to handle.
I really admire your mission and I'm so excited and proud that you're able to come to Slovakia and help the few that need it.
I would like to ask to keep my dad in mind who has been so debilitated by this awful illness. A short flight would make him so happy!
I would also like to offer my voluntary services, please let me know if you need anything while in Slovakia
All the best,
Dear Fly for MS,
First of all, I wish Fly for MS will be a big success.
Please let me introduce myself. I'm Dao Mai, aged 30, female MS patient in Vietnam, a developing country in Asia. I've got MS for 10 years and now in a wheel.
I saw the journey, you will visit 30 countries and among them there's only one in Asia (Israel). Would you please spread the words that even though some countries that are not known for having an MS population doesn't mean there isn't anyone with it?
MS is rare in my country, experience and treatment for it are very limited. The only option available here is steroids and some meds for symptoms.
We know there are disease modifying drugs but they're out of touch. The average income in my country is less than 100USD/month. I can't afford an amount of more than 1.000USD/month for medication.
I also know the manufacturers have patient assistance program. I and my friends spent several years to search for help but got to no where. Maybe it's because I'm not a US or European residents, because there's no MS community in my country, because these manufacturers don't have office here... I don't know. All I know is I'm abandoned and completely alone in this battle.
I'd be very appreciated if you can raise awareness of the advanced world outside about MS patients's situation in Vietnam in particular, and in some poor Asian countries in general. I hope that they may give us access to these expensive modifying drugs some day.
Thank you very much.
Sincerely yours, Dao Mai