SoCal Hemophilia - Town Hall Meeting re: HFSC.

Saturday, February 28th from 4pm-6pm. Omni Hotel - Bradbury Room (251 S. Olive St., Los Angeles).  

This meeting will directly follow CHLA's Family Day, however, CHLA is in no way affiliated with this meeting.

English-to-Spanish Interpretation Service will be provided.

 Generic picture of people who can raise their arms. Extra credit to the man in the middle yodeling. Credit: The Internet.

Generic picture of people who can raise their arms. Extra credit to the man in the middle yodeling. Credit: The Internet.

Rather than create a very lengthy Facebook post and elicit numerous comments better saved for the meeting, I thought it best to describe here what exactly this meeting is all about.

Goal:  Unite community members who are actively boycotting our local foundation and those with serious complaints about it in a solutions-driven meeting designed to discuss and itemize precisely what the complains/concerns/grievances are.  The final list will be shared by Matti Vann & I with the Hemophilia Foundation of Southern California's Board & Executive Director, who have agreed to meet with all participating community members in a Town Hall Follow-Up meeting later this year to discuss these issues.

A few weeks ago, some miscommunication about this first meeting resulted in my emailing the HFSC Executive Director and a couple of Board members to help clarify the misunderstanding. In the interest of transparency and simplicity, I am sharing that email below, as it covers - in detail - the genesis of this meeting, the goals, and recaps the steps forward.

There is, however, one significant change. The email - as originally sent as copied below - at one point reads: "This meeting will not be open to community members who work for specialty pharmacies, homecare companies, manufacturers, or other "industry," nor will it be open to the board or staff of HFSC." After conversation and consideration, I have changed my mind on this - all people affected-by or related-to someone affected-by a bleeding disorder are welcome to attend this meeting and have their voice heard. MY ONE REQUEST for those who wear "multiple hats," is to come as a community member and a community member only. It's against the spirit of this gathering to represent any interest other than community members speaking in a trusted environment with the express goal of unifying.

I'd encourage anyone who'd care to share something with my regarding this to email me directly:

I hope to see many of you next Saturday. It will be a long meeting and perhaps a difficult one at times, but it's opportunities like this that are agents for change if approached with a positive, solutions-driven attitude. Let's give ourselves the best chance we can to become an even stronger and more unified community.

Health & happiness,



Dr. Metz, Linda, and Michelle,

I hope this finds you all well.  Thank you for inviting me to the board meeting held this past week.  I would have loved to attend, but unfortunately was committed by the time the invitation came my way.

Ryan - my producing & programming partner at Believe Digi - spoke to Barbara Chang this week about, Michelle - your experience at Powering Through.  You and I got to quickly share a few words during Patrick Droney's performance before my obligations pulled me away, but I understand that following our interaction you saw the flyer about the Town Hall Meeting and were quite upset about it.  I've also heard rumblings about a potential complaint being issued from HFSC to CHLA for donating a room to me so that I can moderate this meeting following their Family Day next month, and I'm afraid there's a communication breakdown or misunderstanding that's formed. I'd like to nip it before it spirals, so in the interest of getting us on the same page - and I would encourage you all to share this information with the entire board/staff - I'll recap how this meeting came into fruition.  Please forgive the length of this email, but given the importance of the subject matter and the misunderstanding that I'm afraid is emerging, I believe it's imperative to be exhaustively thorough.


Invitation to the ICC Lunch

A little over two months ago, Matti Vann (hemo mom, relatively new to the community) and I were invited to attend the ICC lunch w/ Dr. Metz & Linda.  I was told the meeting was designed to give feedback to the chapter on ways in which it may be able to better serve its members.  It was framed as a very positive meeting.  Then-President of the ICC Bernard Glynn asked if I would be willing to speak about my experience with the chapter, as the ICC wanted community members to have a chance to give feedback directly.  I informed Bernard that I was relatively new to LA and had had minimal interaction with that chapter, but that the interaction I did have was on the whole disappointing  I outlined a version of what I would say - a recap of my experiences with HFSC to date - and sent it to him.  I was told that my feedback was not to be ignored simply because I was relatively new to the SoCal community, and we agreed that I would share.

Linda & Dr. Metz both heard my critical remarks, as well as Matti's critical remarks.  I deeply appreciated how sincere you were, Dr. Metz, when you approached Matti and I to convey your sympathies for the unfortunate experiences we recounted.  You mentioned feeling "deeply troubled" by the remarks, and while I never wish anyone to feel this way, given what was expressed, your response was appropriate and appreciated.

Town Hall Proposal

At one point during the ICC lunch, Robert Friedman suggested a town hall meeting where families could speak openly about their experiences with the chapter. Dr. Metz, if my recollection and the meeting minutes are accurate, I believe you acknowledged a similar town hall meeting being held during your time at NHF that amounted to some real positive changes. Matti, however, expressed that she is connected with families who would not feel comfortable speaking openly or even attending such a meeting if individuals from the chapter were there.  According to Matti, there is fear amongst some of these families that if they speak out, they will become targets of some sort.

Given all this information, and with only an interest in uniting the Southern California community in mind, I proposed the following plan of action:

1)  Matti Vann & I will co-host a Town Hall Meeting for families who have complaints and grievances with the chapter to give them a safe environment in which to have their raw, honest voice heard.  This meeting will be scheduled in Q1 of 2015.  This meeting will not be open to community members who work for specialty pharmacies, homecare companies, manufacturers, or other "industry," nor will it be open to the board or staff of HFSC.

To be crystal clear, this is not how I like to run events.  Those who attended Powering Through last Saturday heard my opening remarks in which I made it absolutely clear that events that I produce are open to everyone in the community - regardless of professional affiliations - so long as everyone who attends behaves appropriately and attends in the interest of community. (These remarks, I should add, were met with rousing applause).  This particular meeting is a glaring exception based on the feedback from Matti that the voices who most need to be heard - those whose feelings about HFSC could be categorized as extreme - would not attend if it were open to all.  That being said, this is not the end point...

2)  Once everyone who attends this Town Hall meeting has had said their piece, I will then organize the feedback into a solutions-driven, actionable list to present to the HFSC Board & Executive Director. I will also make myself available for specific question about how the Town Hall Meeting went.

3)  Having had a chance to review the list from the Town Hall Meeting, Dr. Metz & members of the board and staff will then meet with the community members from the initial meeting at a Town Hall Follow-Up.  Matti and I will again be present to moderate a productive, solutions-driven conversation between the chapter and the unsatisfied community members.


The goal of this structure is to give the community members who feel most isolated, ignored, or disrespected - whether rightfully or not - an opportunity to air out their feelings in a safe, constructive environment, then, to collect all the actionable takeaways, present them to the chapter for review and consideration, before all of us join together to discuss how, as Clem stated at the lunch, we can make HFSC the best chapter in the country again.

I think this structure gives an incredible opportunity to ensure that the southern California hemophilia community is united & thriving!  That's the only goal I have in all this.  Believe me when I say that I would really rather not have to put the time into managing this initiative.  I take no pride in it.  I take pride in our community remaining informed, connected, and empowered.  I take pride in belonging to the strongest and most united chapter in the country, and I take pride in setting the example for other orphan disease populations on how to best build and advocate on a local level.  I do not seek to admonish, provoke, or reduce anyone's character or accomplishments.  I know HFSC works hard to serve this community, but I also know that there are an unfortunate number of people in Southern California that have serious issues with HFSC.  To me, that's unacceptable, and I intend to guide this process in such a way that it gives us an opportunity to rectify, reunite, and thrive as one.


Dr. Metz - I proposed the above structure to you at the end of the ICC meeting, seeking primarily your willingness to meet with the community members at the Town Hall Follow-Up - as it's the single most important part of this process - and you agreed.  

Linda - I mentioned this structure and Dr. Metz's willingness to you at the end of the ICC meeting, and we've since gone back and forth in emails about the progress.  I hope we can continue to keep an open line of communication about this.

Michelle - I apologize that you've been in the dark and took exception to the flyer at Powering Through.  I am sorry it offended you.  It was designed to get the word out to the most disgruntled and hard-to-reach members of our community that there's somewhere they can go to discuss their issues.  I know you arrived late, but in my opening remarks, I specifically addressed the Town Hall Meeting and flyer, framing it as an opportunity for solutions-driven conversation.  For the benefit of Linda and Dr. Metz, I've attached the flyer here.  

As I've mentioned to Linda, I reached out to CHLA to see if they'd be willing to donate some space during their Family Day next month for us to hold this Town Hall Meeting.  I did this because it makes it easier on families who were already planning to attend CHLA's Family Day, and I don't want to unnecessarily burden anyone's schedule.  CHLA had asked me if I would take on some responsibilities during Family Day, and I said yes, if they would be willing to donate a room for our Town Hall Meeting so that we could help strengthen our local chapter.  CHLA was willing so long as I made it clear that they are not a participant nor sponsor nor champion of this event, which is reflected in the attached flyer, and will continue to be made apparent as we get the word out.

Next Steps

Over the course of the next 5-6 weeks, Matti and I will be getting the word out about the Town Hall Meeting, and I sincerely hope we have a tremendous turnout.  I expect there will be a wide-range of feelings, comments, and accusations.  Matti and I are prepared to navigate what I imagine will be a lively conversation, and focus all the participants on the objective: community-building, which means focusing on how any one complaint/grievance/problem can be channeled toward creating a stronger path forward.  I appreciate the confidence Dr. Metz & Linda have implicitly shown in me by agreeing to receive the feedback from the first meeting and agreeing to meet with the community at the Follow-Up.  I hope there is a great attendance from the board at the Follow-Up, and in the weeks to come, we will discuss a date that works best.


I hope this email clarifies the intentions of what Matti and I are doing.  I can't state enough my sincere desire to help build up our community and my lack of interest in drumming up negative feelings for an unguided purpose.  This is a tremendous opportunity for us - as a community, as a chapter - and I believe if we handle this process with an open-mind and grace, unity will soon follow.

Please share this with the board members and staff for whom I do not have contact information.  Please do not hesitate to reach out to me with questions as I believe this is a priority.  I will be attending the event on February 7th - I hope to see some of you there - and I'm also happy to arrange a time to speak more specifically about any of this should any of you or the other board/staff members desire it.

Here's to continuing to build the strongest chapter imaginable!

Health & happiness,