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philanthropy…

i don’t believe any of you know how challenging it is to ask for money. repeatedly. year after year. hoping that this will be the last year you ask because they have found a cure. it isn’t the last year. the cure is not here yet. it will be. i believe that we will find a cure in my lifetime. this is my greatest wish hope desire and intention. i am ok. i am incredibly fortunate. but my good fortune comes from body awareness (thank you yoga) that led to the quickness of my diagnosis so the permanent damage was not as severe. there is damage. most of which i will never let you see. 

the objects that go flying out of my hands. my memory. it’s horrid. the twitching. the spasms. the pure exhaustion that is very rare for me…thank you bully. the ms hug…gotta tell you that is one of the worst symptoms i have and there is no way to escape it…you just need to let it subside. i am one of the luckiest ones. i can run. i can walk. i can hang upside down. i can backbend like no other. i can see. i can laugh. I can sing (very badly but i can). i can love. i can breathe. I can stand on one hand. i can sleep like nobody’s business. i told my kids today i got my pre mom superhero sleeping status back after 25 years:) but the only thing i really want to do is find a cure for the three million people that battle this bully. i never want my kids to get this. ever. or anyone for that matter. i make it look easy. it is not. 

this was my sixth year participating in the virtual fundraising arena…and i always hope it will be my last. but…there are so many people i now know personally, either we’ve met…we’ve spoken…i talk to people from all over the world with MS. it’s like the greatest little gang i’ve ever been a part of:) it is the greatest. the support you can receive from someone who lives with what you do is kinda mind-blowing. you don’t need to say “oh. that happens to me too.” that minimizes what we go through. i rarely if ever discuss the “struggles” i live with – with anyone. i do not have the support i need want and desire because i believe people see me as this superhero one handed sassy badass yogi warrior…which of course i am. i am also a part of something beautiful. and it’s crazy amazing when someone completely understands you without saying a word…

i work my ass off raising money. and i raise money because it goes straight to the top doctors in the country seeking a cure. not a band aid to place over this but a fucking cure. so for the past six years i have been shaking what my momma gave me…at least physically;) i have done things. poses. yoga. in places you couldn’t imagine. on top of jeeps. mountains. rooftops. i am fucking butt naked on my book cover. and some of you think i post these pictures so people will look at me – you are clearly not my people – not the least bit sorry. bye! and that can’t be further from the truth. i post all these amazing photos number one to show you that ms does NOT fucking have me and number two so you will pay attention. attention creates awareness. awareness increases education. and i hope all of these things lead you to donate. money funds research. and research will lead to a cure. there is a method to my madness…

you scroll all day everyday and you never know who is going to stop on your page and maybe make a donation or find a connection for someone they know that fights this asshole bully. i have lots of friends that can’t walk. that can’t make it a couple hours without getting back into bed. friends who are unprotected by vaccines because they have no immune systems from these pharmaceuticals and the treatments they are on. they are still hiding out as the world returns to normal, although normal is the furthest thing from the world we live in today.

i put myself out there for eight months a year. hoping to raise enough money to fund another year of research for this amazing team of doctors. i plan my posts. i write them in advance. not only because my writing requires a lot of editing:) but because this is how i manifest shit. if you know me well you know i can manifest pretty much anything. although there is still one thing i have been unable to manifest (read previous blog lol) 

i do these crazy photoshoots. i plan organize and lead at least four big fundraising events a year. i run for charity. i donate money to the race to erase ms as well…none of this money goes to me. i donate my book sales. my spare change. i donate my time to the behind the scenes of this amazing philanthropic machine. i attend multiple meetings a year to come up with crazy ways to raise lots of money. Nancy Davis, the founder of the race to erase MS is one amazing woman. i have met people that would’ve never ever ever crossed my path ever in my life. and i have donated my badass body to this charity as well. (at least for 54…you have no idea how hard I work) i show you that i am beating the fuck out of this. i need everyone else to be able to beat the fuck out of it too.

it is easy to donate money now through zelle and venmo. and i am grateful for those of you that repeatedly donate. i donate to lots of things. mostly research…as that’s where the cure will be found for all the shit that people go through. what else do i do? i take off my clothes. i bend my body. i write. i speak. i encourage. i educate. i create awareness. i talk with warriors for hope and inspiration. and that goes both ways. there is not one of these people that i have encountered in the last almost six years that does not inspire me. i am awestruck by my warrior gang. you don’t get it until you get it and no one wants you to get it. trust me on that. i just wish i had more people that didn’t get it try to understand…and i hope for the day where we are all healed…not just from MS but from all of the things we have no control over…

i am taking a four month hiatus from fundraising and unfortunately i will be back in September:( i will have new pictures. i will have a new campaign. i will at that point have raised over $75,000 for the race to erase ms just by asking you. grateful and thankful seem like such mild words in comparison to how i feel. what i do matters. it is only for the attention to the bully on my back. i look forward to a summer of exploring relaxing (enjoying my retirement:) stretching running living loving traveling…yep i get to do that too. my face should be completely healed and i should be ready to rock and roll six years as an MS warrior

it’s gala time…
best one so far;)
stay tuned for pics

see you generous beautiful humans in the fall

peace
love 
cure 
namaste

julie blew
like the wind…not the color

1 Comment

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