Advocacy

As I laid snuggled in bed last night I considered again any future in CRPS Advocacy. I’ve previously mentioned that I’ve already stepped back from much of this.  I’m currently not involved in any. I’m partnered with organizations and alliances which may include but aren’t solely related to.

Bay Area, California Taken by Kurtis Ozie (Ozra) VanFleet Sept 24, 2015

Photo credit: Kurtis (Ozra) VanFleet Sept 24, 2015. Bay Area, CA. Stronger Than Pain

 

I re considered momentarily if I should have anything to do with being a voice for it again. Of course this tugged my heart strings as I contemplated. I need to be sure before I take on any further commitments. Since many of my views and beliefs are no longer what they once were I’m really not what you want and therefore I shouldn’t be involved.

I could feel my head move slightly to the left and then to the right. I was shaking my head no.

While I’ll go on to speak about or share things that have impacted me and others in various capacities of pain, illness and disability, I’ll leave CRPS Advocacy to those of you who inspire to do so.

As able, I’ll share you’re endeavors. I’ll try to read and share your blogs, awareness, events, and accomplishments.

This is really all I can do and I hope that it’s enough.

 

Opportunity to join Advocacy Committee

As the Committee Chairwoman for Advocacy, I would like to emphasize the importance of connecting a unified populace for better access to care.

Our community constitutes a commonwealth of patients with various diseases and who are in various stages of their illness. The Power of Pain Foundation
advocates for several different distinctive medical conditions.

I am now seeking applicants from those interested in joining my committee. These are all volunteer positions. Since I am diverse, I prefer those choosing to
work with me to be also. I appreciate diversity and so does the Power of Pain Foundation.

If you are ready to help work on access to care, abuse deterrent formulations, prior authorizations, specialty tier’s, step therapy/fail first and other
issues that we can tackle together, please contact me.

I am passionate about my role as Advocacy Director. I am seeking 7 individuals who aren’t afraid to raise their voice when needed.

1- Legislative and Advocacy Assistant (National)
1- Research (National)
1- CRPS/RSD (National)
2- Neuropathy/Nerve (National)
2- Help oversee my Region. Region 1 (NW) including Alaska, California (Northern), Idaho, Montana, Oregon, Utah, Washington, Wyoming

While a pain related illness with experience and knowledge is a plus, it is not necessary.

Email me: Twinkle.CA@powerofpain.org

With the position you are interested in, Tell me about yourself and how can we help each other to help others?
List any experience. Please don’t over-think it.

Together, we can!
~Twinkle VanFleet
Executive Board Member/Advocacy Director Power of Pain Foundation
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