The weirdest (dumbest) Question I have ever heard…
Wednesday, February 18, 2009
I know they say the only “dumb” question is one that you don’t ask… I have to disagree after recieving one of the RUDEST emails I have ever read this afternoon. I opened my inbox to see a message titled “I just have to tell you my opinion”. Which is great, I love that, as most of you know we have some typos on our website (which I hope I fixed), and we are ALWAYS looking for opinions to make us better. As I read I could hardly believe what I was reading. “Don’t you want CF cured?” ” Your Foundation is taking away from the possibilities of finding a cure” “You are selfish”… These are just SOME of the things I was reading. My eyes welled up with tears and I didn’t understand. To answer those questions, YES, of course I want a cure! I want a cure for all my little CFers out there… Would a cure help me? Not really, because the damage is already done to my 32 year old lungs… I want a cure more than I want anything else in this world and I cannot even believe someone would ask me that question! Our Foundation is not even in the same realm of the CFF, we are out there to help families who need financial help, which the CFF doesn’t do. Our goal is that at the end of the year any money we have left over, we want to donate to FINDING A CURE!!! I am in the process of researching where to start. I have a different point of view when it comes to finding a cure. I want to put money toward an actual cure. Not be invested in pharmaceuticals. My own opinion is that Pharm companies are not going to be looking for a cure the way I would like someone to be looking for a cure. Why would they CURE CF when they make BILLIONS off the meds they sell us… Now, don’t get me wrong, I am SO THANKFUL for all the meds they have come up with that help us, though not so much the price I have had to pay for them… I have been here for 32 years waiting for a cure and I pray in my lifetime a cure is found. I am writing this and I am still a little hurt… To be called “selfish” was like someone kicked me in the gut. I devote all my time to this Foundation and it’s success is so important to me I can’t even begin to tell you… I am not a paid employee, I don’t do this for any other reason than the feeling I get from all of my CF community. It makes me sad that there are people out there that would turn something so beautiful and awesome into something else…
As I was kicking around what she had written to me, I stopped at the Post Office and like a letter from an Angel, I received from a CF momma that we had helped out last year, Mandy. I wish you all could have felt what I felt as I read her card… THAT IS WHY I DO THIS!!! I smiled to myself and decided my response to her would be this blog and any comments that you want to leave… LOL… I will take the high road and just know what we do and why we do it and once again remind you all how much you mean to me…
Thank you all~ xoxo
I am so sorry someone had the balls to actually write that to you. They must not have the disease themselves because anyone that does have it wishes for a cure everyday of their lives.
I agree on the medical companies comment. Even though I too am very thankful for the advances they have made, but you are right…why would they make a cure when they make tons of money off of us.
That comment is inconsiderate and just rude. Take it and just add it to the hall of dumb questions and comments and make it number one!!!
To whoever wrote that…congratulations!!! You won 1st prize in the dumbest and rude comment ever made to a CF’er.
Love,
Jen a.k.a JenDiS on CF Forum
February 18th, 2009 at 2:44 am
by JenDiS
I can’t believe anyone would ever write that either.
First of all, anyone who starts any kind of foundation with the intent of helping other people is not in any way, shape or form, selfish. Thats an oxymoron in itself.
Second of all. Many of those medications are unbelievably expensive and someone should ask that person who wrote that email to walk in the shoes of a CFer or the mother/father of a CFer. I recently got married and my husbands new insurance only covers 50% of my Pulmozyme, which means that my COPAY is $755! Umm…HELLO!?! And then they (the insurance company) have the nerve to tell me, “well there must be something else that you can take that does the same thing as this medication” UMM…what?!? So yeah, what you are doing here is helping to keep little CFer’s healthy enough so that when the cure is found they will still be well enough to benefit from that cure.
I personally feel bad for whoever wrote that email, because I don’t know how anyone can survive in this world being that naive.
Keep up the good work, and Ill go donate another dollar =)
Love, Alyssa
In Loving Memory of Danny
February 18th, 2009 at 3:33 am
by Alyssa
Sarah,
Don’t let the few uneducated and selfish people out there get you down! I’m so proud of you and what you’re doing for so many people and families out there! Keep your head up and your heart in the right place!
February 18th, 2009 at 5:09 am
by Angie F.
Don’t worry about people like that! That person obviously is not educated . You are doing the right thing and u don’t have to explain yourself to anyone! The ones that actually know what u are doing and what BFTF is, they are who matters.. We all know that you are doing a great thing for familys out there.. Keep up the good work! You are doing a great thing for the CF community!! You are a blessing Sarah, not selfish!
February 18th, 2009 at 1:31 pm
by Mindy
I cannot believe that anyone would write that….it’s ridiculous and you are not a selfish person. You are doing GREAT things for the CF community!! There is also a foundation here in NY who raises money so they are able to give that money to CF families in need and I have been on the end of their help and it is amazing what they do. I agree that we really need a cure, but we also need to help people with CF along the way. One of the things that the TTCF has helped me with is gas money to my CF doctor and also to Cleveland Clinic for my transplant follow-up appointments. If they did not help, I don’t know how I would have gotten there. You are doing the same thing that this foundation is doing that has helped me and it reallyis a blessing!! Take care of yourself and don’t worry about that e-mail….it was probably a pharm rep who wrote it. LOL
February 18th, 2009 at 2:00 pm
by Patti (Transplantmommy from a CF forum)
I think your foundation is amazing and a long time overdue in the CF community!! It is great that the CFF is funding the search for a cure, and it’s also great that there are medications and treatments now to keep CFers alive longer. But if we are going to prolong their lives, we ought to also do something for their quality of life as well. There is no point in living a long life if all you are experiencing is hardships.
Brush it off, clearly they don’t get the point of your foundation, you are doing great things!
February 18th, 2009 at 2:41 pm
by Julie
Don’t let one bad egg spoil the bunch. You are doing SOMETHING and you are making a difference. From this CF momma that is an awesome and much respected thing. I hope my daughter is healthy enough, motivated enough, and as selfless enough to do something like this as an adult too!
February 18th, 2009 at 3:13 pm
by Heather (mommafirst)
Awwww Sarah, people are stupid and uneducated. That was just plain rude. The punishment for such a hurtful email should be to be your assistant for one week. See what you do…see how what you do affects people in their everyday life. Or maybe walk a week in my shoes…a bad week. How about the week we were in the hospital with Julianne and they shut off our gas and were threatening to turn off our electric. Things were so bad…we try so hard…we were so down in the dumps right then that no one knows….and then like a miracle you came along and when we got home there was gas and electric ( and there still is because we have most certainly kept up with it!) for our daughter to be able to do her treatments and be warm. That is a miracle…that is the good stuff you do all the time for people. Whoever this mean mean person is they should feel how it is to be on the bottom and be lifted up. A cure will mean nothing if we can’t keep these kids alive in the meantime while they are working on it. We have to be able to get to appointments, afford meds, be able to stay in the hospital without falling so far behind…you are a God sent angel Sarah…don’t ever let anyone tell you different! I am so glad my card reached you at that very moment. Everything happens for a reason. With so much love, Mandy
Oh and to the person who wrote this…if you are reading this…you better be careful…Sarah is a hero to so many…you are messing with little CFer’s role model and hero…that is not the best move…you are gonna have an angry mob of 3 year olds knocking on your door wanting some answers as to why Sarah is upset!! People donate to both causes…that is just how it is…are you going to write to the people raising money for cancer patients and research and tell them they are taking away fromt he CFF??? Didn’t think so.
February 18th, 2009 at 6:33 pm
by Mandy
it is the small minded people out there that have nothing better to do than to hide behind the computer screen and spout ignorance.
you keep doing what you are doing, darlin!! we are here behind you 100 percent!
Sarah, what you think about you bring about. you keep shooting for the moon darlin.. if you miss you are still amongst the stars and anyone that cant see what your doing for the greater good, has bigger problems than need be mentioned.
kisssssses to you sweetie… were here for you! Keep on keeping on darlin! your Tops!
February 19th, 2009 at 6:45 pm
by Kerri (XandersGirl/BeyondBlessed in CF group)