My HEART is writing this post, not my HEAD.
So I apologize in advance.
Yes, I am upset and baffled at the Susan G Komen
Planned Parenthood debacle.
Why take away money
from people that obviously goes a long way
to save and improve lives??
BUT....
I have to tell you, if other more RARE TUMORS got 1/2 as much PRESS and MONEY as breast cancer we would be well on our way to prolong the lives of people like ME who have a very rare type of brain cancer.
Research and funding SUCKS for RARE diseases.
Try listening to a team of doctors tell you this is your LAST option.....there is just not enough RESEARCH to PROVE other things will work for you and even if we want to TRY them, insurance won't cover them because of the lack of PROOF because of the LACK of RESEARCH.
Take for example the devastating affects of Colon Cancer, Ovarian Cancer, Testicular Cancer or the impact of disorders like pulmonary fibrosis, cardiomyopathies or aggressive neurologic diseases like ALS and Huntington's....
Just to NAME A FEW.
No More Options
Now, THAT is what MANY people hear.
They don't have a huge foundation behind them.
All colors matter.
FEBRUARY 29th is RARE DISEASES DAY
Check it out by clicking HERE!
This is MY LIFE in CUPCAKES today.
This is how I feel in my heart.
Posts
20 comments:
I loved your post, Trish! Yes, all colors do matter & you said it so beautifully, as you always do! xoxoxoxo
I loved your post and agree totally! It is terrible how memebers of the government can make so much and so many worthy causes go unfunded.
I was so disappointed in the Komen press release. :( If only I could wave a magic wand and have NO amount of Money change they way we find a CURE for ALL types of Cancer.
YOU know I love you and support you 100%
Agree.
Lost first husband, breast girlfriend, father in law, favorite aunt to cancer........and many more.
We are all hurting, but I hate hate hate you are.
Sending a virtual hug.
And the good news for today is: They reversed their decision!!!!!!! Yeah xo
Yes, they "reversed" the decision - they will keep funding what they committed too but future funding seems a little more uncertain.
All colors matter - agree. Sending you love and hope :)
All Colors Matter. hugs.
All colours, all people fighting all diseases that threaten their existence matter. Hope matters too. Thank you for this post and for bringing NORD and their special day to my attention.
Sending you my heart full of hugs Trish xo
Well said Trisha; the funding leans the same way here in Canada.
Perhaps one day we'll have a multi-coloured ribbon to stand for, and support all cancers.
Judith
AMEN! Well said.
Big hugs,
Lisa
I know it must be so frustrating and heartbreaking at times. I completely understand where you are coming from. My mom and sister both died of ovarian cancer, and now my dear friend's daughter is losing the battle (she's 28) to it also. She has had to "fight" insurance companies to cover trial treatments.
My best friend died of a disease no one has ever heard of, so this means a lot to me. Thank you for reminding us how many there are who need help.
I won't pretend to know how this feels to you. I do think that you are educating others to pay more attention to rare illnesses and that you are a strong, passionate woman who grabs hold of life. I admire you, although we've never met.
-Karen
Trisha, you are so right--and I'm glad that you posted about this. ALL diseases deserve our funding, support, and attention. You are one strong lady, and I love that you use your blog not just to share your fun & creative awesomeness, but to raise awareness too. xoxox!!
Very well spoken! Pink is such a recognizable color for what it represents but often so many of the other colors get left out. I love this post!
Amen!
xo
Pat
What a moving post, every color does matter, I am sending well wishes and hope.
Loved your post and I agree with you. Hopefully a cure will be found for something ... anything ... that can benefit all.
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