Becca's MS Lemtrada Treatment Fund

Hi.  My name is Becca Gurney and I was diagnosed with MS in 2001 at the age of 18.  I have tried all the avaliable medications that are out there to try to control the progression of the disease with no avail.  My neurologist and physiotherapist feel that Lemtrada (a new drug for MS) is the best possible chance I have at halting the progession.  The current drug I am taking is not doing its job and I have had 2 relapses in the last 12 months.  Every relapse has the potential of taking a little more of what I have left away, whether it be my mobility, my cognition or any other area. 

I live in Cumberland with my husband, Jef, and our two dogs, Miika and Abbey.  I am still fortunate enough that I can ride my bike through easy terrain, but walking is a different story.  In the last 3 years I have gone from walking somewhat freely to having to rely on a forearm crutch to get around.  My balance is terrible and the stiffness in my hips and legs gets so bad that the only releif is to sit in a fetal position until my body decides to attempt to relax.  Think of every muscle in your body contracting at the same time and you have no control over it.  It's exhausting.    

I still try to be as active as I can.  I go to physio evey week, take the dogs out for bike rides after work  and on weekends, use my rower and elliptical machine along with weights 2-3 times per week and attend pole finess classes once a week.  I would like to keep being able to do these things in the near and far future.

Due to the progession of the MS, I avoid going out in public.  It's embarassing.  I know that this is not the right attitude to have towards this disease but to get looks and questions from people is hard.  Ironically, I have never liked being the center of attention and all I do now is draw it to me...lol.  I like to think of myself as a happy person, but that does get me down.  I am so grateful for the friends and family that I have that understand my limitations and have such wonderful patience with and for me.     

So I am asking for help.  This medication is an IV infusion taken in two treatments.  The first is over 5 days.  The drug acts like a mini bone marrow transplant, whiping out the immune system totally.  This allows the lymphocytes to regenerate healthy and fresh, not replicating the bad copy that is already there.  It is bacically a re-boot. Another treatment is given 12 months later over 3 days.  This kind of acts like a top up, forcing the bone marrow to produce another round of new healthy(er) lymphocytes.  

For those of you new to the MS world, the immune system is the culprit.  B-Cells which are a type of lymphocyte, cross the blood-brain barrier and attack the myelin sheath around the axon of the neuron in your brin or spinal cord.  These myelin are what send the message from you brain to your baby toe to wiggle.  B-Cells are produced from your bone marrow.  The idea of the drug is to wipe out the immune system, kill all the lymphocytes, and start again.

Lemtrada has gone through all of the clinical trial testing and has proven to halt the disease in most and even show improvement in some people.  It has been cleared by the FDA, but is still in the progress of getting funding approval by Fair Parmacare.  The total cost of the drug is $105,000 for the two doses.  MS 1-TO-1 will cover 20%, so that leaves me with $84,000 to come up with.  I am hoping to get the first dose and hopefully in a years time, have Fair Pharmacare help with the rest.  

Any and all help is welcome and much appreciated.
Thank you for reading and please pass it along :)

Becca :) 

Please check out these links for more information.
https://beta.mssociety.ca/about-ms/treatments/disease-modifying-therapies-dmts/lemtrada

http://www.ncbi.nlm.nih.gov/books/NBK27123/