Friday, August 20, 2010

I've got a big favor to ask all of you! Hear me out before you stop reading.

One of my dear friends from elementary school (Stephanie Magness) has Friedreich’s ataxia (FA). It is a debilitating, life-shortening, degenerative neuro-muscular disorder. About one in 50,000 people in the United States have Friedreich’s ataxia. She has suffered form this since she was 12 yrs old, and will eventually die from it, since there is NO cure...

Every year she hosts a holiday boutique "Stephanie's Hope" to raise money for research for F.A.R.A. (Friedreich's Ataxia Research Alliance). There is a raffle called "The 12 Days of Christmas" in which 12 big ticket items are raffled off. My desire is to provide them with an iPad to use as a raffle gift! Bob and I have been praying about a way to provide them with one. Then this morning I checked my emails and I received one from a virtual rebates program. You shop online at participating stores, Nordstroms, Old Navy, JC Pennys, Apple Store, Best Buy, you name it, they probably have it! You just go through their website in order to get your rebates, anywhere from 1%-5% back on your purchases. Just for shopping through them. Not hard right?

Well, they are offering right now that if I refer 50 people using my tracking # when they sign up, and they purchase $20.00 or more earning cash back, I will receive an iPad! Which I will turn around and donate to the raffle for "Stephanie's Hope!" Sound like a plan??!!

Here is the tracking # Copy and paste to your browser!

This is the fine print:

* A qualified referral is a new user to Ebates who makes a purchase of $20 or more earning cash back. Note, no self-referrals allowed and returned purchases do not qualify. To qualify for the bonus you must refer the qualified new members between 8/1/10 and 9/30/10 and they must make their qualifying purchase by 10/10/10. Only one bonus level per person awarded, you will receive the highest bonus level for which you qualify. Ebates decisions are final. In the event that any of the bonuses as described are not available a similar bonus will be awarded. You are responsible for any taxes, as applicable by law. Referral Bonus Promotion is open only to individuals who are legal residents of the fifty (50) United States, the District of Columbia or Puerto Rico and are eighteen (18) years of age or older.

Hey, it's worth a shot right? If this doesn't suit you, maybe you'd be willing to donate towards the purchase of an iPad with Bob and I? Think on it, pray about it, and don't can help this great cause...possibly even help save lives, or at least extend them...

*I do know too that some of you have CONNECTIONS and you could pull some strings to get some fabulous items donated to this fundraiser! I've got the donation letter, tax I.D. # for the full write-off! I know it might be troublesome to pick up the phone, send an email or text, but it really that difficult compared to the reality of having a disease that slowly kills you? No, and you're good people! It will make you smile and make you feel all warm and fuzzy inside to know that you helped in this effort. :) This boutique is located in Valencia, Ca Saturday, November 13th, those of you in LA, it's not too far from you. Stop by shop and fill those raffle boxes!

All of the information you need is located here:

Stephanie's Story:

In life everyone has a choice; you can either enjoy what God has blessed you with or choose not to see the joy and beauty in every day, even the hard ones. My name is Stephanie and I choose to enjoy what I have been blessed with. That might sound a little cliché to you or even a little too easy, but guess what? It’s true! And one more thing…it is definitely not easy BUT it is always worth it.

Living with Friedreich’s Ataxia is a roller coaster ride for sure; kinda scary and nerve-wracking, exciting and exhilarating all at the same time. You know the feeling that all the best roller coasters give, where you feel torn between wanting to get off as quickly as possible and never wanting the ride to end? That pretty much sums up my life. Actually, it probably sums up everybody’s life. Even in our differences, we can all find common ground. However, each life takes its own twists and turns, and mine? Well, the twists and turns have taken me where I never imagined I’d go….

Even though I was pretty much always a clumsy kid, nothing really seemed out of the ordinary about me at all. I was just like every little girl that loved dressing up, playing with Barbie’s and dreamed of growing up and getting married, becoming a mom, or being a supermodel (maybe even all of it!). And then when I was 12, I turned into a girl who was anything but ordinary, only I didn’t know it yet.

In 7th grade, there was a mandatory screening for scoliosis during P.E. and I remember the lady examining me being fully shocked that I didn’t know I had scoliosis. After my parents promptly took me to my pediatrician, which led to visits with a few neurologists, we knew why no one had noticed my curvy spine until it was almost shaped like the letter “S”. There was something a whole lot more serious going on. More tests and doctor’s appointments than I could count finally provided the answer; Charcot-Marie Tooth (CMT). At least, we thought that was the answer until my physical abilities kept declining in a way that wasn’t matching up with CMT. So 10 years, more tests, and more doctors later, the truth came to light, I have Friedreich’s Ataxia.

Friedreich’s what?? I think that was pretty close to what my parents’ and I said when we heard this new explanation for why I was having so much trouble walking and keeping my balance. I have to admit that I wasn’t at all prepared for learning about the severity of my new reality. A wheelchair, severe loss of coordination, slurred speech, and a shortened life-span were no longer unimaginable but expected. I believe that God spared me the knowledge of my true diagnosis for those ten years because I was not as emotionally able to handle it at 13 as I was at 23. For that, I will always be thankful. Especially because, the future is so much more promising for people, like me, with FA now as opposed to 1994.

The hope of a cure for FA is what has drawn me into fundraising and given me the courage to allow anyone to see into the parts of my life that I was once embarrassed and afraid of, parts I tried so hard to ignore and keep hidden. FA has taken so very much from me and I hope that I can be a small part of the efforts working so hard to end this disease, making sure that one day FA will no longer be able to take anything from anyone. I hope that you’ll join with me in the fight against Friedreich’s Ataxia.

While it has been anything but easy living with FA, I have learned to accept what I cannot change; I love my life and consider myself to be truly blessed. Everyone’s life goes in directions that seem unexpected and even unwanted at times, but we’re all in this together. Everyone has a disability; some are just more obvious than others.


  1. I'm too tired to think straight right now as it is wayyy past my bedtime, but I'll sign up later.

    I was also wondering if you would mind if I posted a link to this one post on my Facebook?

  2. Sure, that would be great, Teresa! Thanks :)


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