As the fund is starting, things are always changing. And rapidly. I’m working hard not only to establish the fund for what it is ultimately meant for, but also to create awareness.
Right now, I’m in the process of completing the necessary paperwork, but also recruiting and establishing a board of directors for the fund that will ultimately help to guide it and make sure it is doing the right thing for MS patients.
At this point I’m waiting to announce who both the voting and non voting members of the board will be until all the necessary paperwork is completed for establishment of the fund and the fund has received the necessary approvals from the federal government. This, unfortunately, takes some time.
Because this takes some time, I am limited in the amount of soliciting I can do for the fund directly. This is why campaigns are being launched through go fund me. Ultimately, that’s not a long term solution, but it’s bridging the gap.
Within the MS community, there is a desperate need to assist those that need it. Currently, assistance to MS patients involves a patchwork of national, international and local charities and organizations. They assist with things like mobility assistance as well as financial advice and guidance in order to overcome some incredibly huge obstacles.
But, within the MS community, we have the capacity for incredible strength. We have the ability to help each other. For instance, I have mobility devices that I no longer use. I’ve paid for them. But I’ve uninstalled them as I no longer use them.
I also have the financial capability to pay for the creation of the fund in order to protect the capital investment that already exists. That capital will ultimately grow and help me to assist more MS patients.
My background for the last 5 years has been personal finance and investment. Undoubtedly, this endeavour is much larger and has much loftier goals.
Within the MS community we are surrounded by organizations and individuals that work on awareness and advocate for patient needs. But we are lacking in the ability to provide material support. As much as we provide motivation and emotional support to each other, we simply do not have the means to provide at this point. MS Warrior Fund has the goal of ending that. So often we support organizations that are reaching for a cure but ignoring the human capital involved in reaching that goal.
We pay for research. But our drug prices increase. We walk or roll or stumble for organizations to reach their goal of a cure that won’t benefit those that are currently suffering through a disease that has robbed them of their mobility.
When drugs are created, we are the ones that volunteer for clinical trials. We deal with side effects. We are the ones stuck in bed. We are the ones puking out our lunch. We are the ones struggling to make it to appointments so they can test our reflexes. We are the ones that suffer through eight hour exams to measure our cognitive ability.
And yet, no real support comes to us. We just struggle.
MS Warrior Fund has he aim of stopping that isolation from support. It has the aim of assisting and creating something better. Not just for 20 years from now. For patients that deal with all of these obstacles right now. Every day.
Whether you have relapsing-remitting or secondary progressive or primary progressive, you are all too familiar with these obstacles.
So let’s change it. Together. Forever.
– Blake Hurdis
MS Warrior for life.