A Personal Message...

Thank you!

I wish to first thank the national and international Huntington's disease community for their love and support throughout the last few months while my father was very ill. This time was very difficult for my entire family, especially for my mother. As many of you are aware, I had been away from Facebook throughout the entire ordeal. When I had the opportunity, I would post a comment or a picture. As the days moved on, I continued to miss my Facebook family. The safety net of our HD community has always been a therapeutic outlet for me, and advocating for our peers has been a fixture within my life. I have always tried to advocate in the best interest of so many, and within my heart, I believe I have been successful. After the recent passing of my father, I was humbled by the outpouring of love and kindness from the national and  international Huntington's disease community. It was bittersweet - the first time since I joined the social network support system, it was now time to be the recipient of such support. My family and I read the hundreds of posts via Facebook and Twitter, and we were further blessed to receive an overwhelming amount of sympathy cards. It deeply affected me, and hit my heart and my soul - the community who I support and love, was there for us in our time of need. For that, I will be forever grateful! 

Although my family is still in mourning, my father’s wish and message was for me to continue my advocacy mission, and to complete The Huntington’s Disease Project. Although it is still very difficult, I know that dad is “up there” wanting me to move forward in his name. That is what I intend to do.

I've been bundled...I mean BANNED! 

I just recently returned to Facebook and began posting and advocating. Unexpectedly, within hours of posting, I was “banned” from my own account. At this current time, I am still unable to utilize my Facebook.  I can view my page, and groups, but I cannot "post", “like”, or “reply” to anything. The automated message from “Facebook” was clear:

§          
         "Your account has been blocked due to reports from other Facebook users.  Facebook has policies in place to stop behavior that other members may find annoying or abusive. We can't lift this block for any reason, so please be patient and refrain from using these features while you wait for this block to be removed. Once you're able to use these features again, you must significantly slow down or stop this behavior. Further misuse of site features may result in more blocks or your account being permanently disabled.”

     

Was I angry – mad – furious?  HELL yes!  This was an outwardly malicious attack on me. This was not a misunderstanding, or an accident.  Sending a letter or response to “Facebook” is like shooting a missile into deep space, hoping you will hit a star.  I had to swallow the fact that “we” are at the mercy of a “machine” called Facebook, and all efforts to write a complaint would be futile. Simply, I must now wait out the “punishment” period.  Not only has this upset my entire family, this made my mother (who just lost her husband to Cancer and Huntington's disease) cry!  

*This is not the first time I have been under attack. In January 2012, my computer was infiltrated and ironically, the only information deleted pertained to Huntington's disease.  Just an FYI: I am not a novice of information technology.  However, after exhausting all measures to try and find the "source", I sent my hard-drive to an investigative agency in New York. Their findings were unsettling - this was not an amateur malicious attack, but one from someone who has money and resources.*       

*Verbiage, intellectual content, and projects were copied from WeHaveAFace.org and utilized by another organization.*

These are just a two examples of what has transpired over the course of one year.  

A Straightforward Message to All:

I completely understand that individuals may not “like” my points of view, or the advocacy mission I created via WeHaveAFace.org.  Over the last year, I have had to “save-face” and “play nice” when a certain few of my peers decided to outwardly lie about (WeHaveAFace.org) and my intentions and advocacy for the JHD/HD community. As I did then, I shall state now – You do not own Huntington’s disease. You do not own the way in which one advocates. You do not have the right to hurt people whose intentions are pure…who are fighting alongside you – for you. You do not have the right to consider yourself an advocate or and organization if your actions intentionally hurt or mislead the ones you claim to serve, or advocate for. In my opinion, an advocate (for any cause) should press forward with dignity, honesty, and integrity. I decided several months ago, and will continue to move forward now, without the unnecessary and inappropriate drama. This is why we have chosen to support many national and international organizations who are honest and trustworthy in the fight for the Huntington's disease community.  My decision to associate with, and support these organizations, is due to transparency and the ability to coexist and work alongside one another - with one another.  It is not about exclusion, but inclusion, and shared values and goals. WeHaveAFace.org has reached out to many medical professionals, organizations, and advocates since March 2011, and I am blessed to be among so many brilliant and inspiring counterparts. Our mission seemed insignificant to many in the beginning, however; in time, many countries have accepted us and joined in solidarity to bring about awareness of Huntington's disease.

If “you” are in disagreement of my posts, messages, pictures, articles, blog entries – you have options!  Yes, you do!  You have the freedom to act appropriately: 

- Delete me as a friend

- Block me from your Facebook

- Unsubscribe or remove my posts from your timeline   

- Get over yourself, and ignore my posts and read something else

- OR, confront me and let us communicate

I am not writing this blog entry with hate, or anger, but with honesty. Inasmuch, I must underscore that I will continue with my advocacy route.  My mission, which is carved in stone, is fueled with more passion and with the spirit of my father. My outlook is more clear now than ever before, and nothing or no one will stop me. I will continue to advocate in truth and love, no matter the cost. 

Resistance by: WM Penn Patrick (early 1970s)

"If anyone is doing anything of any consequence, they're bound to run into a respectable amount of resistance. No person, corporation, or ideal becomes great until great resistance has been encountered...[criticism by loved ones, friends and relatives] are devises to cause you to maintain the status quo...great harm befalls your loved ones when you fail to be yourself and do your thing. This is so because you lose your enthusiasm for life, your growth process stops, and your self-esteem diminishes. Those negatives are reversed when you stand your ground and when you have prevailed...Let us be grateful that our ideas have proved worthy of tremendous resistance...this resistance is evidence of our greatness and it provides us with the energy to prevail."

You are loved!

James Valvano
International Operations Director

WeHaveAFace.org

Email: James@WeHaveAFace.org

Up Close and Personal...

I often receive emails and correspondence from fellow community members asking me about my life...about why I advocate...about "who I am"...  I don't usually post personal "things" about my life, but here I have chosen to reveal a bit about myself, experiences, and home-life.  

I sometimes reflect back to when I was seventeen...

While attending college, I began my first full-time job working at a group home for Catholic Charities in Queens, New York.  I was terrified - but eager.  How was I going to do this?  How was I going to help individuals with developmental disabilities?  Many questions rang through my mind, but I continued my training and pushed forward.  Slowly, I began to realize that the job was deeper than anything I had expected.  Beyond the bathing...feeding...shaving...diaper changing...urostomy care...there was always a loving person peering up at me - the patient.  The word "patient" turned into "friend" - which quickly transformed into "family".  The bonds grew so wonderfully with each individual in the home.  They relied on me, and I relied on them.

...something was happening inside of me...but I didn't know what it was...

Weeks turned into months, and months turned into years... I studied alongside the most amazing medical professionals I have ever met.  I needed to do more...be more...  I attended and assisted with many Special Olympics within Queens, and learned that each of us has amazing talents and abilities - no matter the disease or disability.  I trained as an AMAP [Approved Medication Administration Personnel] and continued to strive to better the lives of those I served.  I completed my training and served as a Residential Counselor and used my voice to make sure my patients were connected to, and receiving the best care from, qualified Social Workers.  I began to see the politics behind the scene and continued to advocate in the best interest of every individual within the home.  I was blessed to have the opportunity to write ADL [Advanced Daily Living] goals for each patient, with the aim to have each of them live life to their fullest potential.  This time in my life was beyond enriching...it made me grow as a human.

Life has a way of throwing us many curve-balls... After working at the facility for over four years, I decided to take a trip to Florida.  Florida? Why?  One of my best friends had left NY to care for her cousin's children in Jacksonville, Florida.  I hadn't taken a vacation in years, so I decided to visit.  This decision changed my life and put me where I am now.

...something was happening inside of me...but I didn't know what it was...

After two days visiting Florida, she and I decided to stay here permanently.  Was it destiny, or a youthful and carefree decision?  I can't answer that question.  After a short while, I returned to NY to say my "good-byes" which was one of the most difficult experiences I ever lived through.  I remember the hugs and love I received from each of the patients (my loving brothers and sisters) at the group home, and my promise to them was that I would always keep them in my heart, and continue to help those in need.

I spent four years in Jacksonville, and learned that life can be a major struggle.  I worked in Corporate America and earned quite a bit of money...but something was missing!  I learned that money does not make you happy, no matter how much you have.  

...that "something" continued to happen inside of me...but I didn't know what it was...

My family (my mother and father, four brothers, two sisters, and their spouses and children) decided to leave NY and move to Central Florida.  Soon after they settled in, we decided to leave Jacksonville, and move closer to them.  It was the best decision. As time moved on, I found myself "lost" and needed to find what was missing.  I was blessed to find a position as a Program Director for OARC, [Adult Day Training Facility for 50 individuals] for individuals with developmental disabilities.  I was the fish who found itself back into water!  As I grew, I learned so much from each of these amazing people.  They became my family.  Alongside my sister-in-law, we coordinated the first community inclusion program which was one of the most rewarding endeavors in my life.  Our passion to see our peers live to their fullest potential furthered our efforts.  We decided to create a Supported Employment program for which our peers could work at various businesses, and be included within our community.  It was amazing to see our community come together!

..."it" continued to happen inside of me...but I still didn't know what it was...

Four years later, I was given the opportunity to work for Spectrum Community [a very large chain of group homes] in Central Florida.  I was offered a position as a Group Home Manager.  It was yet another hard decision to make, but I made the same promise to each individual within the Day Training Facility as I did to my family in New York.  I was yet again privileged to work for, and become family with, wonderful residents at the group home.  I continued to train and study alongside some amazing professionals, and received my ABC [Applied Behavior Certification] and continued to persevere...I had so much to look forward to...but...

 ..."it" didn't stop..."it" continued to show itself...and it slowly brought everything to a standstill...

Three years later I couldn't handle "it" any longer.  I visited countless doctors... psychologists...counselors...took every drug prescribed...to no avail. I left the field (deeply saddened and feeling hopeless), and took time to "see" what was going on in my life!

My next venture was something completely outside the box, but something I had always dreamed of.  With a friend, we opened our own Marine Aquarium store.  It was beyond therapeutic...  For the next three years, I was given the opportunity to work with an amazing individual and get to know community members, personally.  

 ..."it" continued..."it" showed itself more and more...

In 2009, my second oldest brother was diagnosed with this thing called "Huntington's disease" and we knew NOTHING about it.  It was at that very moment I knew that it was inside of me too.  Everything from the emotional, mental, and physical aspects of what I was experiencing came to a clarity.  I hit the biggest brick wall!  Why was I having issues with depression?  Why were parts of my body moving on their own?  Why did my eyes move side-to-side, involuntarily?  Why couldn't I concentrate as I used to?  Why? Why? Why?  The obvious answer came after my test results came back - Huntington's disease.

Let me back up the bus...For a few years we noticed something happening to my brother, but we didn't know what it was.  He refused to seek the help of doctors, and continued to drive.  Sadly, the day happened - he was in an accident.  He then decided to allow us to take him to the hospital.  Within three weeks "it" was clear.  My brother's progression was advanced, and at that time, we placed him in a group home...so much was out of control!  My parents were physically unable to care for him.  He struggled with behavioral issues and outbursts, and moving him into a group home was such a hard decision to make.  It was a tragedy to see my brother, who was a business owner, and a professional dance instructor (and a real Ladies-man) deteriorate in front of our eyes.

After the dust settled, I spent the first few months hating life...hating everything and everyone...I become something unrecognizable and hid from everyone.  I looked into an empty mirror and found myself spiraling out of control....

Then it happened...the day I looked into that same mirror and saw a glimpse of who I used to be.  That day I "smashed" the mirror and decided that it was time to "take out a big straw, and SUCK IT UP" - do something!  ...then came Facebook...then came the most amazing feeling of "rebirth" and understanding.  My life was beginning to unfold into something I could have never imagined....

In 2010, my father tested positive (however we already knew because the physical manifestation had been there for some time).  Around the same time, one of my nieces tested positive...with so many more at risk.  In 2011, not only were we battling HD, but now cancer.  Dad was diagnosed with cancer of the lung, and brain (we are currently waiting to see about his colon).  BUT to this day we hold fast and have faith...we move forward.  Ian and I lost our home, and moved in with my parents, and just recently moved my brother out of the group home to live with us.  We live each day as it is our last, with love, support, and understanding.  We can never give up!  I do not plan to do so!

I sometimes reflect back to when I was seventeen... 

Will I be the one peering up at someone from a bed in a group home?  Will I need to rely on my family members for my care?  If so, it's going to be okay! I know that I am surrounded by so much love!  I will peer up at "them" with love in my eyes, and hope in my heart, the same way I did at seventeen.

...If.

Judge me not...until you know who I am!

You are loved!

James Valvano

The Huntington's Disease Project - 2012 Trailer Release

*Updated - 3/16/12* - Link to Feedback*

"The Faces of Huntington's Disease: I am No Longer a Faceless Face"

I wish to start by thanking some of the most wonderful people I have ever had the opportunity to work with!
Directors: June Brown, Crystal Martin Zachary, Cindy DuPree, Sue Wright, Deb Madden, Melissa Biliardi, Clarice Miller, Kimberly Spears.
Associate Directors: Ron DuPree and Shelagh Wright.
...I want thank our very special junior members for their dedication and participation -  Ashley, Nicole, Zoee, and Jenn for their participation and dedication within the documentary.
...I wish to thank my entire family for their ongoing love, support, and faith!
...to our peers - our loving and supportive Huntington's disease community...we thank you for the hundreds of emails...Facebook messages...phone calls...  We love each of you, and thank you for the support to push forward and strive to make a difference!

The Faces...

Video Testimony Example

The creation of this project has brought along a spirit of its own.  From its conception, up until the release of the trailer, we watched as the international support of our mission grew.  In March 2011, we asked the community to participate (send us their stories, enter The Lottery to have a chance to be filmed in the future documentary, and to provide us with their video testimonies, and much more).  We were deeply grateful for the hundreds of stories, Lottery entries, and video submissions.  Hundreds of our peers were no longer willing to be "faceless faces" in their communities.  Although the mask removal was utilized, its mechanism only symbolized breaking free of any stigma(s), and to celebrate what is beneath - bravery, love, hope, strength, and inspiration.  Has this approach been criticized?  Yes, and I completely accept and respect that view.  However, each of us has the wonderful right of freedom of expression.  The overwhelming community response validated our efforts and the mission of the international project.  It was through this community effort that we realized the length of the road ahead of us.  We set out on a mission...On the road - Help 4 HD!


The Documentary Format

After much debate and discussion, we agreed that the direction of the film must be tailored: documentary-style with a different feel.  The format for the future film will incorporate dramatic (symbolic) imagery, music, and the infusion of true-life experiences of our JH'Dears, H'Dears, families, caregivers, and medical professionals.



"Well isn't that what happens in most films/documentaries?"
Well, yes...our approach is similar, however we will create something which is rarely seen.  One of the ultimate goals is to reach out to the international community who remains unaware of this horrific disease.  This format will also facilitate the very first venue for our international community to tell their stories: uncut- uncensored - untainted.  We are taking this documentary across the globe, which has never been achieved or tried before.  It has always been our rooted desire to shed light on all aspects of Huntington's disease, and the challenges we face on a daily basis.  We implemented a Facebook group, which played an instrumental role in the way we constructed our plan - finalized our approach.  The feedback from the group gauged the needs, concerns, and desires of the very community we belong.  The topics and sensitive subjects within the documentary will undoubtedly be challenging to film, however without full-exposure, the entire effort will fall flat.  That is not an option.


Imagery - Infusion

As with many things in life, we are more inclined to "get it" when we "see it", whether the imagery is symbolic or innate to what we feel, think, or experience.  As with the trailer, the documentary will continue to utilize visuals to relay and express specific experiences and feelings to the viewer.  With all due respect to beloved documentaries (of which I am an AVID fan), we will replace the "static" feel, which is often found in "interview-style" productions, without compromising the message.  As reported by individuals [one hundred advanced-screening viewers], this format poignantly delivered.  It is my own personal belief (and hope) that viewers will indeed see why we created the trailer in the manner we did, and feel the sincerity and impact of the imagery used.

"What was that song in the trailer?"
The music within the trailer is from Jon of the Shred: "The Dark Cabal Decays"  -  We were blessed to use this score as the main soundtrack.  It simply captured the emotions, and tied together the raw nature of each individual's personal experience within the trailer.  Their stories, and the stories of so many more will be revealed in the full-length documentary.  We thank Jon of the Shred for his donation to the mission, and support for the Huntington's disease community.

"I want to tell you that I loved what all of you have done with this trailer.  You didn't hold back and the visuals were very powerful!" 
"I was moved by everything I saw and I can't wait to see how the entire documentary looks."
"I didn't know much about the disease other than it was like Parkinson's disease...this really opened my eyes."
"It was not easy to watch but I am glad I did...I had no clue this disease even existed and I will make sure I help spread the word."
"It scared me at first but then I thought,'why the hell wouldn't it'...this disease is obviously awful!  Great job waking me up and making me understand!" 
"Are people in the trailer actors?  Who are they?  I was very touched by this and I pray that the movie gets produced and makes others aware!"
- Advanced-screening viewer comments [April 10-12].

Not only from a creative aspect, but from the perspective of individuals within the Huntington's disease community, "holding back" is definitely not an option of the team.  For over four decades so many went unnoticed and remained silent. In many instances, with good reason and it is well understood.  However, so many within the community wish to speak out and tell their stories.  Although some may feel indifferent toward the approach and format (and we respect those opinions), but our ultimate mission for the documentary is to get the international community involved, and to allow for our stories to be told.  Every single individual within the project is directly affected by JHD/HD - sadly, some in more than one way.  Some have HD, at risk for JHD/HD, had loved ones pass from this disease, a caregiver, or a combination...  We are not actors, but advocates in the truest and most sincerest form.  We have made it a core responsibility to respect our community members while advocating via The Huntington's Disease Project.  The manner in which we work, and the end result, will reflect that responsibility.

The Future...
Without a current, comprehensive, and all-inclusive documentary portrayal of Huntington's disease, it is a great challenge to produce such a feat.  However, our goal is to do just that, and to provide a valuable tool in which the international community can use to further educate others who are unaware of Huntington's disease.  The momentum, drive, and positive feedback of our community is at an apex, and it is with that force that we will move heaven and earth to produce this film.  It is paramount to mention that individuals who knew very little or nothing about Huntington's disease [advanced-screening viewers] expressed a strong desire to educate themselves and contribute toward advocacy.  This is the support our international community needs, and will play a key role in broadening awareness and lessening ignorance.  Our mission is carved in stone, and our ambition to ignite awareness of Huntington's disease has been set into motion...

I encourage and respect - thought, expression, and individuality within our international community. It is so important and necessary! I am a forty-year old man, LIVING positively for the first time in my life.  I love and cherish each individual within the JHD/HD community, and pleased to see my peers advocating in their own special ways. Never lose sight of the fact that each of us are "special ingredients" within the advocacy recipe!  We are all working toward the same goals - awareness, treatment(s), or the cure for JHD/HD! That my friends, needs to be celebrated every moment of the day!

"There is no greater agony than bearing an untold story inside you." - Maya Angelou

View the Press Release.

View the Trailer:

 "The Faces of Huntington's Disease: I am No Longer a Faceless Face"

View Trailer Here.

To send us feedback regarding the trailer, please utilize the feedback form here.

To view what the public has to say about the trailer - here.

You are loved!
...with respect and hope for the future - James Valvano

Think before you walk!

...just a suggestion: Think before you walk!

Not long ago, a fellow community member made the numbers of a national nonprofit (HD) organization transparent to the community: since 2009 the HDSA only allocated 7% towards research (as per their 2009-2010 annual report - page 6).  Following the news, an earthquake was felt across the entire HD community.  Did this news boggle my mind?  Absolutely.  Did it spark anger and hundreds of questions within the Huntington's disease community?  Absolutely.  BUT, it was swept under the carpet and many of our fellow community members decided not to further the conversation.  The HDSA "7%" topic faded away, and many within the community buried their heads in the sand, and pretended not to hear the truth.  What was further alarming was the that it was revealed that the HDSA stopped funding research (also in 2009).   

Want to walk?  Throw a basketball?  Have a fundraiser? 

Go for it!  However, do your homework first! Investigate!  Here are some helpful tips for my fellow JHD/HD community members:

1- Find out the overhead of the event.

2- Ask the questions: 
"What will the donated money be used for, or where will it go towards?"

3- If a national HD organization specifies that 7% of the money raised will be allocated to research, ask the following questions:

• Are the donations collected put forth to paying old / delinquent research grants?
• Are the donations collected allocated toward new research?  If this is the case, don't stop there!  Be sure to ask for the names of the researchers and inquire about their current work.
• The Bottom line: Where is the money collected from this event going?

4- Be sure to ask if the collected donations stay "locally" as this is a very important question! 

Keep in mind that YOU, the donor, can make a direct contribution to the researcher or clinic and eliminate the middle-man if you are unhappy with the answers you receive, or if your question(s) were unanswered.  There's nothing wrong with the donor contributing to their favorite Huntington's disease clinic or researcher.  In all actuality, by doing so, you can possibly build a wonderful and lasting relationship.  Another note: each university and/or hospital has a department where you can make a defined HD donation.  No matter the amount, your donation would be well appreciated!

Food for thought: On February 27, 2012, Deshalamar CDC 501 (c) 3 released EndHD.org.  This effort was created to support Dr. Jan Nolta's (UC Davis Health System) research for the treatment or the cure for Huntington's disease.  Deshalamar realized that it was time to give donors an additional venue to donate on research which shows promise.  As per Deshalamar, 100% of donations received via EndHD.org will be set aside (in a separate allocated fund) and sent directly to Dr. Nolta's research program.  

Back to the point!  Before your thoughts run wild,  I would never state that these community events are unimportant.  They are vital to the cause, and to broaden awareness of Huntington's disease.  However, is it too much to ask for transparency?  Transparency needs to be the key ingredient to all parties attending, preparing, walking, sweating, cheering... GIVING.   People have the right to know where every dime raised, will go.  That my friends, should be the aim.  The fact that this conversation must be brought to the forefront is, in itself, quite disheartening.  Another sad truth is that many in our own community will decide to wear a blind-fold and continue to move forward as if nothing is wrong.  I sit in awe and sadness when I continue to see - Bowl-A-Thons, Hoop-A-Thons, Golf Tournaments, Drive Toward a Cure, Team Hope Walk  for the Cure...etc., and I hold on to HOPE that others have asked the questions...held the conversations...prior to raising funds, attending, and participating in these events!

Okay, so I'm gonna go there!

Many within the community have sent me private FB messages and emails with their concerns regarding "The Strategic Plan" which was presented to the JHD/HD community.  Why do they write to me?  Could they be afraid or confused?  I truly do not know why, but I am blessed that the community has a place they can voice their concerns, feelings, and opinions.  They are aware that I am unafraid to "ask the questions" and give their concerns "a voice" to be heard.  Do I have thoughts about this Strategic Plan? Absolutely!  When a national company, which has been in business for over four decades, has to resort to turning to the community (which they claim to serve) for advice, feedback, or internal improvements, there's a problem.  A HUGE problem.  Just an FYI - the problem does not (did not) start with the people.  "It" (the problem), sits around a boardroom table...trust me, at one time I sat at one.
[The Board of Trustees: in charge of reviewing numbers/figures/financials...in charge of grants/research approval - no one else.]

As one community member wrote to me - "I have a hard time understanding why they don't know what we need...all of the added stuff just doesn't make sense."  That's just one of many.

Moving on...

What I found to be most bothersome was the roll-out of a thirty-nine page spread.  This speaks volumes regarding the disconnect and failure to successfully understand the very community who they aim to serve.  This isn't just my opinion, but the opinion of so many within the community.  One of the most frequently asked questions from the community regarding The Strategic Plan was - "Why now?"  

March 1, 2012-

As another fellow community member wrote:
"...did they really begin this strategic plan eighteen months ago?  Or, is it due to the various grassroots organizations blooming in, an around their backyard?"  - Now that is some serious food for thought!

March 1, 2012-

From a fellow HD peer: "The website shows something called a coalition for the cure list of researchers, but I can't find it where it says that these researchers are being funded by the HDSA? Is this old or new?" 

...Great question, and I'd love to have the answer!


**For insight please take the time to view The UCSF 9th Annual HD Symposium: View Here!

*When you see a document for a community event stating - "...support HDSA's programs of Research..." revisit the Symposium above and reflect, then pick up your phone and make the call.* 

In Closing - 

Now, I am no stranger to community stone-throwing.  I accept that some might not like the way I advocate. So be it!  I've been called a "loose-cannon" and "someone with the gene"
<Insert scary music here> ...and so much more.  Regardless, I have never been afraid or ashamed to stand up for those within my community.  Have we been lied to?  Well, the proof is in the pudding!  IF I am wrong, I will admit to it, but until then, I will do everything I can to get to the bottom of this...until my very last breath.  I ask not to be judged on what I've written,  but for you to actively participate by asking the questions and finding the answers!  It is true that the future shows HOPE, but without a clean and transparent slate, we will never move forward together!

"The truth is that our finest moments are most likely to occur when we are feeling deeply uncomfortable, unhappy, or unfulfilled.  For it is only in such moments, propelled by our discomfort, that we are likely to step out of our ruts and start searching for different ways or truer answers." - unknown

You are loved!
- James Valvano -

"Stigma" - The Year Old Mask

"Stigma" -  The Year Old Mask


Stigma

1. A mark or token of infamy, disgrace, or reproach
2. A small mark; a scar or birthmark.
3. Medicine. A mark or characteristic indicative of a history of a disease or abnormality.
4. Psychology. A mark or spot on the skin that bleeds as a symptom of hysteria.
5. Biology. A small mark, spot, or pore, such as the respiratory spiracle of an insect or an eyespot in certain algae.
6. Botany. The receptive apex of the pistil of a flower, on which pollen is deposited at pollination.
7. Archaic. A mark burned into the skin of a criminal or slave; a brand.

Tomorrow will make a year. It seems like a lifetime ago...

On February 2, 2011, I decided to submit a short film into the NeuroFilmFestival - "The Faceless Faces of Huntington's Disease"

*Please watch my entry into the NeuroFilmFestival with your eyes, mind, and heart - wide open*

Many of you will remember what transpired following the release...

I feel it is necessary for me to revisit this topic as a reaffirmation of my decision to produce and enter it into the NeuroFilmFestival contest. Some who have grown close to me over the year learned quickly why I chose to submit a depiction of Huntington's in the manner I did. Within the first few days of its release, I received (literally) hundreds of emails and Facebook messages. As the days turned into weeks, the correspondence grew exponentially, and I decided to address the community (transparently) by posting questions/comments received, and my honest answers.

Was the short film scary, frightening, and unsettling? Yes, I believe it was, but so is Huntington's disease. Before February 2, 2011, no one had ever attempted to portray the physical, emotional, and psychological aspects of this disease for what it actually is - a monster. My portrayal (my personal view) of this disease came with a price. Many within the community were angry, mad, outright disgusted, and expressed those feelings with me. The price also came with a silver lining. It made others realize that it was time to expose THE disease. Slowly, viewers "got it" and understood the meaning behind the visuals - the meaning of the "MASK". The sun still rose high in the sky each day...the air around us still existed for us to breathe. Nothing changed, but the understanding behind my depiction. The film has reached the world-wide audience and has been seen by thousands. The influx of emails and Facebook messages began to morph into something so beautiful. People began to understand that Huntington's disease is a part of my daily life - my family's daily life. My father, brother, niece, and I have the disease...with so many more at risk. It was with the blessing, understanding, and participation of my family, that I created the film. Those closest to me comprehended my attempt to portray Huntington's disease in the flesh - raw and unapologetic. This was not only my way to expose the monster - my monster, but to address the stigma by removing my mask. I am no stranger to community response. I worked with individuals with developmental disabilities for over fifteen years, and witnessed the glares, stares, and awkwardness when I would take patients into the community. BUT, it was up to us to change that. We offered education and conversation to community members, which diffused so much of the "stigma-driven" ignorance.

"The community is screaming for the truth to be "seen" and "heard"..."I no longer wish to be a faceless face!"..."Thank you for being honest with your film!"..."HD is a monster and I totally felt exactly the way you did."... Hundreds of comments came rushing in.

[Hundreds upon hundreds of our fellow peers (internationally) came forward and wished to "remove the mask" of Huntington's disease. They were tired of hiding...not having a voice...a choice...a place. The time is now to come forward and celebrate what is inside each of us. The overwhelming response was amazing and we as a community shall stand up and be counted. We must do more than walk in national events, we must step out into the light - across all avenues. We must reinvent ourselves and become a well-oiled machine of advocacy.]

"My aim was to express my feelings - honestly, openly, and provide a "real-life" form of what we experience in the JHD/HD family. I am a filmmaker - I am an individual within the Huntington's disease community with the ability to express myself in such a way." - one comment I wrote to a fellow community member.

In my opinion and experience, identifying or utilizing the "Mask" does not exacerbate social "Stigma(s)", especially when a person or community completely understands its usage and meaning. Moreover, when it is used to educate and "spark" others to seek understanding - my ultimate goal. Symbolism is key and quite necessary in film, especially when it equates to, and brings about awareness and further discussion. Many Hollywood (and epic) films depict topics and/or historical events to remind us of the true nature of life, and factual experiences. Are they easy on the eye and heart? Maybe, maybe not. Sociologically, we are creatures of what we are taught - and what we are exposed to. However, when we examine the difficult truths in life, sometimes we must think before we place a brand of "Stigma" on something. Remember - man invented and described words like "Stigma", but it is up to us to comprehend that we do not have to take the meaning literally, nor should it stop us from seeing beyond what is indeed, the truth.

Flash to the present...

Born from the release of my film on February 2, 2011, was a movement I was not prepared for, nor expecting. What was I supposed to do? What should I do? Could I do it? Those questions were quickly answered by the resounding support of a community who accepted me for everything I am, and for what I could offer. WeHaveAFace.org emerged, and the blessings continued to grow. A team of average, ordinary individuals came together (from the result a five-minute film) to bring about awareness on a global scale. Hundreds and hundreds of individuals from more than thirty countries began to "remove their masks" and say- "My name is __________________, and I am no longer a faceless face!"

Examples of international entries: http://wehaveaface.org/TheVideos.html

The birth of - The Huntington's Disease Project

"The Faces of Huntington's Disease: I am No Longer a Faceless Face"

"Stigma?" - What's in a word? Who is actually using it?  
Today, as I sit back and reflect upon everything which has transpired over a year's time, I deeply thank the JHD/HD community for one hell of a ride! My promise to YOU, my fellow community members is to continue to advocate in the way I know how. I won't be on this earth forever, but I vow to make a difference and to provide any/all support to each of you! So, I wish to celebrate everything we have accomplished - together! 


To know me is to love me...to know me is to understand me. I am, so therefore, I can. You are loved!

James Valvano

Advocacy 101...in 2012

The Advocate 

"It is a strange trade that of advocacy. Your intellect, your highest heavenly gift is hung up in the shop window like a loaded pistol for sale." Scottish Philosopher - Thomas Carlyle

We tend to take the rooted meaning of the word "advocate" for granted.  What does it truly mean?  

Verb: speak/write in favor of; support/urge by argument; recommend publicly.

Noun: a person who speaks/writes in support/defense of a person, cause, etc.

Many of us tend to "fit the bill" on a daily basis, and consider ourselves an advocate for Huntington's disease.  What happens when advocacy within a community transforms into a game of chess?  There are those who have never played...those who are beginners...and those who are masters of the board. Which one are you?  

In a previous blog - "Facing Huntington's Disease - Everyone has the ability!" 
I highlighted the way the Huntington's disease community advocates:


"We are all battling the same disease - from many angles (internationally).  We are all seeking the same outcome -the cure!    How do we get there?  How do we face it together?  Without question, we must continue to raise awareness and funding, via community events, walks, and the like.  However, in my opinion, this is not enough.  It is far from enough.  It's been the norm for so many years.  It's been the token expression of Huntington's advocacy.  It has been the "poster child" way of our community for decades.  Many within the community feel that they must hold firm to one path, which has been the mainstream advocacy route.  You can walk a million miles for Huntington's disease.  You can fund-raise and write checks to whomever we wish.  Although these efforts are beneficial to the outcome, it doesn't stop there.  We must do more - much more. These efforts are just drops in the advocacy bucket."


After publishing that blog, I began to notice that many within the community began to step outside of their box...outside of their comfort zone. On various social networks, conversations were taking place.  Individuals within our community began to understand that it is important to walk  and raise money; moreover, they realized that more had to be done.  Some continue to remain inside the box and play games of chess - futile at best.  I on the other hand, resign myself to the game...there's too much at stake.  If one organization acts as if it is the singular advocacy group, it will only cause stagnancy within the movement!  Visit our Circle of Support and join the international effort!

The rebirth of Help 4 HD -The HD View (The first radio platform for Huntington's disease -  Melissa Biliardi) literally made an impact on the community.  The Huntington's disease community began to participate and engage in topics and discussions never attempted before.  The numbers spoke, and so did our community.  It wasn't an easy road, and each of the topics discussed are quite sensitive.  The aim was to shatter the ceiling, but with the utmost care and precision.   


I am blessed to have Melissa Biliardi in my life - as my friend - my family - and as my U.S. Communications Director for WeHaveAFace.org.  I have been blessed to work with an amazing team of individuals who inspire me each and every day.  Clarice Miller and Deon Leftenant of Deshalamar continue to support and strengthen the mission, and believe in The Huntington's Disease Project.  The Directors have come together, and as a united front, we have stepped outside the advocacy box.  We have walked for Huntington's disease, but now it's time to broaden the movement.  It's time for real change - time to take action and leave complacency behind.

I am an advocate...a free flying bird, unafraid to soar and spread my wings.  I owe my very existence to the air beneath my wings and the freedom of unimaginable hope within my eyes.  I will not be caged or bound, yet when I rest, I find the tallest tree on which to perch.  I await tomorrow...another day - another moment to spread hope across the sky.
- Which kind of advocate are you?  


  


"It is a strange trade that of advocacy. Your intellect, your highest heavenly gift is hung up in the shop window like a loaded pistol for sale." Scottish Philosopher - Thomas Carlyle

...therefore, I am that pistol hung up in the shop window - loaded with a mission - one without a price tag!  I am, therefore I can!  Want to fly with me?  I know you can!

You are loved!

...It's a Beautiful Thing!

If someone had told me (in early 2009) that my life was going to change dramatically, I would not have listened.  Sometimes I find myself wondering, "...was all of this meant to be?"  In the shadow of Huntington's disease, I found a deep sense of friendship and solidarity within a community of so many.  The irony still lingers - I found a new meaning of friendship, never having met most of these wonderful individuals.

I remember the beginning...feeling alone and lost!  As I look back on the recent past, I am in awe at what a community CAN do.  Although we fight daily to advocate for JHD/HD, and so many of us experience hardships and life's curve balls, we continue to stand strong!  We move forward - onward!


Community Participation...
The most amazing thing began to happen.  The community began to participate in The Huntington's Disease Project, and an idea became a reality - a mission!  The support strengthened, and with the selfless help and dedication of Deshalamar.org, we built a foundation - a promise to our international JHD/HD community.  Deon Leftenant and Clarice Miller of Deshalamar, gave us a chance...gave us hope. We set forth on a united mission to bring about awareness of Huntington's disease, and to help as many of our peers as possible!  It was happening...happening rapidly.  Something beautiful was growing...

The Project was further supported with the inclusion of Melissa Biliardi's - BlogTalkRadio "Help 4 HD" (now - "The HD View")  Melissa joined THDP and soon after, decided to merge her Help 4 HD creation with WeHaveAFace.org.  As the days progressed, we found that our missions aligned!  It was through these combined efforts that we truly realized the magnitude of the cause.  The dynamics did not change - they strengthened!  WeHaveAFace.org was no longer just a 'website', but a place for the JHD/HD community to call their own.

The Huntington's Disease Project is not just a documentary, but a living, breathing, and necessary movement.  After the countless emails and inquires from the international community, we realized that the time is now.  So many within the community were (are) looking for a way to be heard - to be seen - to be recognized.  The functionality of The Project is just that!  It has taken a bit of time for the community to realize or digest that we were 'for real', and our mission will happen.  Our project IS your project!  With your participation and selfless donations, we can make this happen!

Then there's the App!
In late October 2011, we released the Help 4 HD mobile application!  It was not only about time...but also about the need.  We were blessed to have the ability to offer this application to our JHD/HD community! With so many websites, and a plethora of information which already exists, it was our desire to offer an "On the road..." approach toward Huntington's disease advocacy.  We decided to utilize technology to bring education, resources, and information to the international community.  Our approach was yet another defining role in our mission.  Help 4 HD is an extension of THDP, and we are excited for the future, and the endless possibilities!   If you wish to download the application to your Android or Apple device, you can download it here: Help 4 HD

No Longer Looking Backward...
If you constantly look backward, you will miss everything in front of you!  The entire Team looks forward to working with the JHD/HD community.  We have so much work ahead of us, but the future is what we make of it!  WeHaveAFace.org invites you to move forward - together!  Our Team is a wonderful group of individuals within the JHD/HD community.  I am so proud to have been given the opportunity to work with each of them, and hope that you will make the decision to participate!

Believe me when I say...It's a beautiful thing!








You are loved!
James