Good Morning and Hello west coast fresh cup of Java! I'd like to extend a big thanks to our Friends out on the west coast from the Pacific Grind Cafe, for the amazing Java beans they sent! They are some of the smoothest beans around! So as I am sitting here enjoying my freshly brewed Cup-O-Joe, after a semi-decent's night sleep (for me at least) and a great day yesterday with the Grand Opening of the CHRONICLYsILLy Designs© Awareness Shop & Boutique and I'd like to extend a big thanks to all of you, for your tremendous support and encouragement! I am feeling "okay" this morning, better than I have the past few days at least, and I am more than ready and willing to accept any improvements that come my way!
I have a very exciting day today, as I am joining the lovely Chelsea Kasai, with the LFA, for a business lunch/meeting to discuss a few things with regards to the Butterfly Gala, CHRONICLYsILLy, and what ever else she may want to discuss. I am very excited to make her acquaintance as I have been working closely with her over the phone with regards to the Inaugural Butterfly Gala being help in NYC for the very first time this September!
So with a big morning/mid day ahead of me, let's get our blog rolling this morning! Today, I am featuring a lovely young woman, named Tiffany Marie Peterson. She is living lupus at 24 years old and is doing incredible things to raise awareness and make a difference, and what a difference she has made already!
"Tiffany Marie Peterson is a twenty-four year old lavender caterpillar living in NYC; striving to become a STRONG luscious lavender lupus butterfly! She dreams of spreading her wings to help promote Lupus Awareness all across the globe. She loves till her soul reaches capacity & dreams till it becomes reality. Focusing on keeping a positive outlook on her life with Lupus & inspiring others to do the same!" Tiffany, who was recently diagnosed this past January with SLE Lupus, she decided to take action! And take action she did. Tiffany not only is a fellow writer of mine over at The Lupus Magazine, but she has started and is in the process of legalizing a non-profit organization that she founded called "Friends Against Lupus!" In an excerpt from Tiffany's first article that introduced her to the magazine she states:
"I was was diagnosed with SLE Lupus in January of 2010. After reviewing and researching symptoms, I realized I have been experiencing symptoms as far back as six years ago! In January I was confined to my bed, and in constant pain for about a month before I was able to get health insurance and finally see a doctor. It's been a long, rough, and painful road since then.
I remember feeling alone, like no one knew my pain. Unable to move any of my limbs... I didn't feel much hope at all. I remember just wishing I would fall asleep never to awake again. It seemed like no one, not even family members or friends were understanding or sympathetic for what I was going through. The only thing I knew about lupus was a print-out sheet my rheumatologist gave me.
I remember feeling alone, like no one knew my pain. Unable to move any of my limbs... I didn't feel much hope at all. I remember just wishing I would fall asleep never to awake again. It seemed like no one, not even family members or friends were understanding or sympathetic for what I was going through. The only thing I knew about lupus was a print-out sheet my rheumatologist gave me.
After being put on heavy steroids such as prednisone, I was finally able to walk again with minimal pain. I think I cried when I woke that first day without excruciating pain. In March I began to do my own research online about lupus. At the end of March I created the 'Friends Against Lupus' Facebook page. That's when I discovered the 'Walk for Lupus Now NYC' event, which was scheduled for May 1st. I had the entire month of April to make something happen.
I started the page originally as a place where friends and family could learn about lupus and how they could help be "against" it. I wanted a place I could share my learnings with them. It also became the name of my 'Walk for Lupus Now' walk team. A friend of mine designed a logo for me so I could have team shirts made. I didn't have high expectations because I figured a month wasn't much time to raise money & recruit team members. I was proven wrong!"
Now, that page has grown into so much more, as Miss Tiffany has extended her reaches and linked up with many of the surrounding Lupus associations and affiliations in her area, she has participated in health fairs, and holds health booths all over New york City to raise awareness and raise funds! From painted butterfly faces on the little kids that visit her booths, to the decorative and vivacious signs that hang, Tiffany is doing big things to get the word out on Lupus and raise awareness!
"My goal is to form 'Friends Against Lupus' as a legal NYC Non-Profit Organization. One who will work with other lupus foundations to reach lupus patients and their families worldwide. I want to create & fund programs that lupus patients need but don't have. I've spoken to many people and they seem to have no kind of support besides groups like mine that they happen to come across online, or through social networks. Something as simple as a "tweet" can brighten the day of someone who is living with lupus. I remember my dark moments when I felt alone, and I never want for any lupus patient to feel that.
That's my mission, what I strive for. Some of my family members don't understand it, or me, *laughs* but I have chosen this and I truly feel as if its my calling and I don't want to do anything else but this." -Tiffany
I could not agree more with Tiffany on all of her positions when it comes to Lupus and raising awareness, as well as funds for those that cannot afford the proper medical care and are suffering each and every day without no end in sight. If you'd like to get some more information on Friends Against Lupus, check out their Facebook page! And see what miss Tiffany and her Friends Against Lupus team are up to! They are always doing big things to bring awareness to the fight for Lupus! Also, be sure to check out Tiffany's latest article for the Lupus Magazine, published in the August Edition, Tiffany's article "Be a light for Lupus" is a great guide to how you can get more involved and spread awareness in your local community!
For more information on Friends Against Lupus check out the facebook page link above and located on the side of the blog bar (to the right!) as well as The Lupus magazine and Tiffany's articles/ bio page there! Her article-->Be A Light for Lupus! Also, if you wish to contact Tiffany and Friends Against Lupus for any questions, inquiries or comments please email:
FriendsAgainstLupus@gmail.com!
I had the pleasure to meet Tiffany at the 2010 Walk for Lupus Now Awards Dinner in New York city, we were sitting at the same table by chance, and have now band together to raise awareness with Friends Against Lupus and CHRONICLysILLy! Keep up the great work Tiffany and I look forward to seeing you soon!
Now that we have wrapped up our week with a week's worth of blog posts featuring people doing big things for Lupus awareness from all stretches of the globe, I'd like to conclude our post with our usual parting tid bits of information and links so that you all can stay CHRONICLYsiLLy throughout your day, and of course I will conclude with our daily Jolt-of-Java!
Jolt-of-Java: It takes a lot of courage to release the familiar and seemingly secure, to embrace the new. But there is no real security in what is no longer meaningful. There is more security in the adventurous and exciting, for in movement there is life, and in change there is power.
Alan Cohen
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