Jake's blog

Touched by the closing plenary!

Day three was a great way to wrap up the forum.  I really enjoyed Dr. Cargill’s presentation, it seemed genuine and heartfelt.  It is nice to know we have an ally in Washington such as her.  I was very moved by her passion and conviction that came through, while completely maintaining her composure.  She really touched on some great points and I think we could all follow her example of how to truly advocate for the things we so strongly believe in.  I also really appreciated the stories and experience Robert Fullilove shared with us.  Like him, I feel there is tremendous hope for the future based on all that has been accomplished through activism in the passed few decades alone.  We, as a country, have really overcame a lot within the lifetime of many who truly laid the groundwork and set a high precedent for activism as a means of social change.  I do believe there is still a lot of hard work ahead of us all, but we control the outcome through our efforts.  I have left the forum charged up and ready to go back home and to work identifying the needs in my own community and building a network of other advocates to work for change and tackle some of the disparities facing PLWHA.

I would especially like to thank all of the organizers, presenters, guests, and attendees that made this past week possible.  I am truly inspired by those that have given so much of their time and effort to make living with HIV a little easier and more manageable.  I am further inspired by the clear and evident passion of the collective of persons who attended.  I look forward to future alliances, partnerships, friendships, and the opportunity to work with any and all of you.

Interesting town hall....but did it accomplish anything?

Having just left the town hall portion of the day, I was quite moved by many of the stories and experiences people shared.  I would like to say thank you to all that had the courage to stand up and share their stories, thoughts, and concerns.  I am also grateful that we had a panel of individuals from the various agencies willing to share what they could, but I felt as though many of their responses were canned or scripted and not much I could take away and really put to work in my community.  I will say I think the panel handled the overall meeting well, as many that took the microphone were seemingly in attack mode and not really posing questions that would prompt meaningful discussion.  I can certainly understand the passionate and emotional drivers behind the thoughts, but I would like to see more restraint and composure, as I think that it would better facilitate a legitimate dialogue.  Those thoughts aside, I do believe that channeling those emotions and elevated passions can help us all to maintain the momentum when heading back to our local communities as advocates and activists alike.

Great affinity group to start the day!

Day two is going great!  I attended the Save ADAP's affinity group today and feel like I have some actionable items I can take home to work within the community to advocate for continued treatment, particularly for those who can't afford the cost of treatment on their own.  I did find it alarming that there seems to be such huge disparities in services on a state-by-state basis.  I’m not sure how to best support and advocate for those who live in areas not as fortunate, but I plan to do whatever I can to provide support and be a resource for all I can.  I am most excited about the opportunities that will come from being part of a larger network of individuals with a shared goal.  Definitely looking forward to signing up for as many networks as possible Friday before we all head back home.

Day one reflection on the Treatment Symposium....a little delayed

Well, it seems the technical issues are resolved and the blog is able to be accessed again…yay!  I thought for sure it was user error on my part, but thankfully I can say it wasn’t me.  That being said, day one was great.  I felt like there was a lot of information covered in a short amount of time.  We received a lot of the ‘what’ and ‘why’, now I’m looking forward to the ‘how’ today.  It is apparent this could easily be a two week forum with all of the information that is available, but I’m grateful to have the couple of days that we do have.

I’m still processing a lot of the information received yesterday, but I think the standout moment for my personal self was when Nelson Vergel spoke during the first session of the treatment symposium.  Having suffered some of the metabolic issues related to treatment and fully feeling the physcological impacts in my own life, it really hit home.  I hope I get the opportunity to thank Nelson in person while here; the work he has done advocating has directly affected my daily life.  I recently underwent Sculptra treatments and have had an immediate lift to my self esteem and emotional well being.  Without the efforts of Nelson and others like him it’s likely the gap in treatment for such issues would not have been filled.  I look forward to learning more today in hopes that I can work to further fill in the gaps and keep the fight alive to ensure others get the treatments they so rightly deserve.

Hello from Seattle!

Hello there my fellow advocates and future friends, I’d like to take a moment to tell you a little about myself.  My passport says I’m 36, I’m not sure I agree just yet.  I currently live in Seattle with my 11yr old daughter and her wonderful mother. I am a father, partner, student, activist, and community volunteer.  In the past few years I have focused much of my time on being more active within the HIV+ community.  Having lived with HIV for nearly 12 years now I have a bit of experience with the day to day dealings related and a some personal interest on the treatment front.  I currently volunteer weekly with a local nonprofit group facilitating a peer support group for individuals who are newly diagnosed/dealing with HIV.  I also volunteer my time to speak to local schools about life with HIV when called upon.  I am very excited to be attending the upcoming forum and look forward to meeting you all.

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