This Saturday is the MS Walk in Roseville/Rocklin, CA - and I have been asked to speak to the group of walkers & volunteers that day. I'm at a complete loss. I have only been diagnosed about 4 years - I haven't raised an exorbantant amount of money for research - I just continue to live my life...
I only have to speak for a few minutes - but really I'm just not sure what direction to go with that.
We're all gathering together with a common purpose - to raise awareness of and funds for research - in the hopes of finding better treatments - and a cure for this crazy disease that has touched all of us. While the disease touches each of us in a different way - it has brought us all together - in a new kind of family. A family of support - encouragement - and most important of all - hope. Hope that this stupid disease will soon be something only read about in some obscure medical history journal. I'm supposed to be there to encourage these people in some way - but ultimately - I believe that I just may be the one most encouraged by the many people coming together to stand up against Multiple Sclerosis.
Any suggestions/guidance would be so very much appreciated.
Thanks!!!!!
Kristie
22 April 2009
17 April 2009
Updates
First - I have to apologize for not posting any updates for such a long time. Life has a way of seeming to fly by when we least expect it!
I've received notification from the University that my first appointment will be toward the end of the first week of May. I cannot tell you how much I am looking forward to that. I am very excited about the possibilities & count entering this trial as a huge blessing.
In just 8 short days (April 25th) I will be at the Rocklin Walk MS Event. My mom is flying down from Portland to walk with me - and Randy has arranged to take that day off from work too. Jessica (my 9 year old) has 'play practice'/'dress rehearsal' for the big production at school, so she won't be able to join us on the walk next weekend. She's asked to be able to walk the route this weekend though - so I think we just might do that. That's one way to get out of the house!
So many of you have sent in your well wishes and many of you have donated to the walk. To all of you - I send my many thanks!
Did you know that for every $1.00 raised for Walk MS, $0.78 goes toward research, programs and education? (The remaining $0.22 is invested back in to the society for future fundraisers or to cover administrative costs.)
I've received notification from the University that my first appointment will be toward the end of the first week of May. I cannot tell you how much I am looking forward to that. I am very excited about the possibilities & count entering this trial as a huge blessing.
In just 8 short days (April 25th) I will be at the Rocklin Walk MS Event. My mom is flying down from Portland to walk with me - and Randy has arranged to take that day off from work too. Jessica (my 9 year old) has 'play practice'/'dress rehearsal' for the big production at school, so she won't be able to join us on the walk next weekend. She's asked to be able to walk the route this weekend though - so I think we just might do that. That's one way to get out of the house!
So many of you have sent in your well wishes and many of you have donated to the walk. To all of you - I send my many thanks!
Did you know that for every $1.00 raised for Walk MS, $0.78 goes toward research, programs and education? (The remaining $0.22 is invested back in to the society for future fundraisers or to cover administrative costs.)
02 April 2009
Lab Rat Update
Well, I signed all the consent paperwork yesterday at UCDavis for the CONFIRM study. I'm really excited about the possibilities. The drug being used in this trial is actually a reformulation of a drug that is currently FDA approved for psoriasis treatment... so at least this isn't a completely new study drug with so many unknowns as some of the others currently in trials.
I now begin a 'wash-out' phase - - - which means I'm off all MS meds for the next two months. After that, I'll go in for an official 'screening' visit which will be followed by the baseline appointment. After that, it's one visit a month. Most visits will take less than an hour - and one appointment every three months will take a majority of the day.
There's no monetary compensation for the study - at least not in the form of receiving a check. However - if you look at it in the form of the savings on all the doctor visits (my co-pay is normally $15/each), plus the savings on the MRI's (my co-pay is about $300), plus the savings on the medications (my co-pay is about $100/order), plus the savings from all the various lab-work (my co-pay is 20%)... well let's just say that adds up to a pretty significant compensation package!
Some of my family/friends have raised concerns about the possibility that I'll be assigned the placebo drug. My response to that is if I am assigned to the placebo group, there is no other environment where I'd be better monitored. Monthly exams and lab work and MRIs every 6 months will keep a close eye on any disease progression. So - I'm okay with being a lab rat!
01 April 2009
Moving is...
Here is the message of the day from WALK MS in Northern California:
Moving is universal.
Moving is essential.
Moving is expressive.
Moving is defiant.
Moving is natural.
Multiple sclerosis stops people from moving.Your support of the 2009 Walk MS ensures that it doesn't.
Walk MS is more than just a walk. It's a rallying cry uniting those living with MS and all who care about them. Walk MS promises to raise $1.6 million in 2009 to fund local programs and services for 87,500 people whose lives are touched by MS. The Society invests almost $50 million annually to fuel the efforts of hundreds of researchers throughout the U.S. and abroad. That investment is paying off in significant advances toward finding improved treatments as well as better diagnoses, rehabilitation and symptom therapy.
Thank you to everyone that has been able to offer support & sponsorship thus far for the 2009 Walk. If you haven't yet had an opportunity to do so & would like to make a tax-deductible donation to the MS Society & sponsor my team in this years walk, please use the link on the side of the page to Donate to the 2009 Walk MS.
THANK YOU EVERYONE! Your support is invaluable.
~Kristie
Moving is universal.
Moving is essential.
Moving is expressive.
Moving is defiant.
Moving is natural.
Multiple sclerosis stops people from moving.Your support of the 2009 Walk MS ensures that it doesn't.
Walk MS is more than just a walk. It's a rallying cry uniting those living with MS and all who care about them. Walk MS promises to raise $1.6 million in 2009 to fund local programs and services for 87,500 people whose lives are touched by MS. The Society invests almost $50 million annually to fuel the efforts of hundreds of researchers throughout the U.S. and abroad. That investment is paying off in significant advances toward finding improved treatments as well as better diagnoses, rehabilitation and symptom therapy.
Thank you to everyone that has been able to offer support & sponsorship thus far for the 2009 Walk. If you haven't yet had an opportunity to do so & would like to make a tax-deductible donation to the MS Society & sponsor my team in this years walk, please use the link on the side of the page to Donate to the 2009 Walk MS.
THANK YOU EVERYONE! Your support is invaluable.
~Kristie
Lab Rat Potential?
Well - I mentioned in a previous post that I was hoping to become a lab rat once again. This afternoon I will be able to take one step closer to my goal! I received a call from the study coordianator at UCDavis yesterday and I am scheduled to meet with her today to sign 'consent' paperwork. I'll update everyone with the status after the appointment today.
Until next time,
Kristie
Until next time,
Kristie
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