TITLE: Chat with Joyce Kullman, Executive Director of the Vasculitis Foundation
DATE: January 5, 2014
Ed: PAN Support Network Moderator / contact: eob50 [at] consolidated [dot] net
Joyce: Executive Director of the Vasculitis Foundation / jakullman [at] vasculitisfoundation [dot] org
Nick: Melbourne, Australia
Matt: Atlanta, Georgia
Lamar: Clever, Missouri
Maltshop Hop: Australia
Ed_PSN Moderator: Welcome to our PAN and Vasculitis Chat. The PAN Support Network has been doing these informal chats for nearly 11 years, but this is our first use of this particular chat room so I hope that it holds up for us. I think it will.
Let’s get started as we always do with a round of introductions from everyone.
I’ll go first---my name is Ed Becker, and I’m the founder and director of the Polyarteritis Nodosa Support Network—PAN Support Network for short. I’m not a patient, but I was a caregiver nearly 15 years ago when my Mom contracted PAN.
Joyce: Joyce Kullman - executive director of the Vasculitis Foundation. My dad has GPA/WG
Matt: I'm from the metro Atlanta area, I have PAN
Nick: MPA since 2006. Remission for past 4 years with some hiccups along the way. Live outside Melbourne Australia.
Lamar: From Clever, Missouri. PAN patient, no definitive dx in remission
Estela: From Hawaii.. PAN since 2012.
Karen: I’m Karen and I’m from Australia still on the medical merry go round have been for years but being treated as if I have vasculitis and pan fits best
Ed_PSN Moderator: So let me introduce Joyce Kullman who is the Exec. Director of the Vasculitis Foundation (VF). This is important to clarify---Joyce isn't a doctor, nor does she play one on the Web. :-).
And I’m not a doctor or medical expert. So we won’t be able to address any real clinical issues tonight. However, in upcoming chats we will be hosting rheumatologists and other medical experts in vasculitis—so please hold your questions for those chats.
If you do have a pressing medical question, let Joyce or myself know and we can help steer you to a medical specialist off-line.
Thank you. And so let me turn to Joyce.
Joyce, give us a little background on the mission and goals of the Vasculitis Foundation.
Joyce: The VF's mission is to help educate our patients and family members about vasculitis and help you find physicians and resources to help you manage the disease. We believe education is key.
The VF offers a detailed website, newsletter, VF consultants, symposiums, chapters, etc. I am thrilled we have two people from Australia as well as Hawaii and Missouri and Atlanta.
Ed_PSN Moderator: Folks, rather than go into a lot of detail here tonight in this venue, I’ll steer you to the VF website where you can really dig into the details.
The VF is a huge resource and it would take too long to cover everything here.
Here is a link to the website. I encourage you to visit and just look around.
Joyce, the VF is also heavily involved in promoting vasculitis research, correct?
Joyce: Absolutely. We fund research on vasculitis. We just selected 3 studies for funding starting this month.
Ed_PSN Moderator: Talk about what happened this past year in terms of significant events, goals, and accomplishments.
Joyce: Well...we funded our V-RIDI impact study - which is a two year study to during the impact of vasculitis on our patients and families. No one has this data and we need it to be able to advocate more effectively for more research funding.
Joyce: We hosted a great patient symposium in Philadelphia this past summer.
I think one of the most important things we did this year is videotaping our patients and family members and creating a library of stories for our community to watch. Ed spearheaded the project: Extraordinary People Living Extraordinary Lives.
The videos are amazing - people sharing their personal stories. It really brings home the fact that we are NOT alone.
Ed_PSN Moderator: Some people may think the VF is just a website resource. But it's really a lot more than that, isn't it?
Joyce: The website is a great tool. It is a year-old and has had over 140,000 visitors. I think the VF "connects" people to the resources they need. I see that as our role.
Connecting patients to doctors; researchers to patients; patients/families to each other to provide support and education. We can all learn from each other.
Ed_PSN Moderator: Final question before opening up. Joyce, let's say I'm a newly diagnosed patient. What should I do in terms of getting help from the VF? Maybe I need a rheumatologist or maybe I need to find a clinic that specializes in it? What should I do? Would I call or contact the VF? What can the organization do for me at that point?
Joyce: the first critical step (and often the hardest) is finding experienced and knowledgeable doctors who KNOW vasculitis. They may be experts in something else but you really need doc/s who knows vasculitis. We can help you identify physicians near you (if you're lucky) but often patients have to travel to one of our vasculitis centers.
We also like to connect you with other patients who maybe be able to "mentor" you or just offer support. Social media has provided some tremendous support avenues.
You also have to educate yourself and your family about the disease. There is a learning curve for most people because most people have never heard of the disease before they are diagnosed. Then you have to learn to spell it and pronounce it.
Ed_PSN Moderator: As I say...there's simply too much to share about the VF in this forum, so I encourage you to just visit the website and look at all the resources there.
Whether or not you have PAN, Cryo, CSS, it doesn't matter.. the VF really covers all of the vasculitic diseases..
Okay..with that we'll open to questions. Estella..you have the first one, please go ahead
Estela: My question was for the lab indicators for someone to go on remission.
Ed_PSN Moderator: Do you mean interpret lab results which may indicate a remission?
Ed_PSN Moderator: Well, as I say, neither Joyce nor I can speak to the clinical side here. I think Estela could find some answers via the VF site. What do you think, Joyce?
Joyce: I'm not a doctor but you should be having blood tests done regularly. Also, are your symptoms improving? Yes, I would suggest you go to our website Estela to get more information.
Estela: My symptoms are improving. No more pain, nodules.
Joyce: Physicians used to only look at blood tests but now they are looking at everything. Are your symptoms decreasing, i.e. joint pain going away, kidney function improving,
Also there is a couple of videos on the YouTube education channel about clinical monitoring and what lab tests mean. The physicians break it down.#
Ed_PSN Moderator: Estela. Actually I'll put you in touch with Dr. Eric Hoy. He is our medical advisor. He is a lab guru. Write to me at firstname.lastname@example.org and I'll connect you with Dr. Hoy.
Nick: General question. Has the venue and date for this year’s VF symposium been set yet as would like to get there?
Joyce: We are not planning any big symposium this year due to the expense. Instead we are offering a series of online webinars beginning in late January. Also, we are asking our chapters to host educational meetings in their areas. These will be like mini-symposiums. If you have an idea for a webinar please email me email@example.com with your idea.
Nick: Thanks Joyce. Sounds good so look forward to getting details
Ed_PSN Moderator: I think the webinars will be terrific...they will be accessible to so many people. Go ahead Lamar#
Lamar: When will Dr. Hoy be a guest?
Ed_PSN Moderator: Well...we're working out the date, but it may be as soon as next Sunday. He's globe-trotting right now.
Joyce, mention a little bit about the consultants with VF and how they can be a valuable resource
Joyce: We are fortunate to live in the day of the internet. It allows us to connect with great physicians. There are vasculitis centers that do patient care and research. There are other physicians that just see patients or do research. Both are critical roles. So, our goal is to connect the patients with them whenever possible.
Ed_PSN Moderator: We also are lining up some rheumatologists and researchers to be our guests so you can chat directly with them.
Joyce: Absolutely. Ed is the best general. I really believe we can conquer vasculitis because we are all working together.
Ed_PSN Moderator: So Joyce..the info on the website is of course free...
Nick: No more from me Ed....just thanks to you and Joyce for ALL the good work! We are never alone
Joyce: The VF encourages people to join the organization. Dues are US$35/year but can be waived if a financial hardship. We want to be connected with as many members of the vasculitis community as possible.
Ed_PSN Moderator: By the way...the VF really is an INTERNATIONAL organization. That's important to remember. We have chapters all over the world, right?#
Joyce: This makes our awareness and advocacy efforts MUCH stronger. We really need people to be involved as much as possible. We understand that sometimes health, work, family get in the way but we love it when people participate in such activities as Vasculitis Awareness Month in May.
We do have members all over the world. I would love to talk especially to the Australians on board tonight. I spent a year backpacking through Australia so love the country. We just selected a research study from the Australian National University for funding. I am hoping this will be a way to springboard getting the group active again. I know people have had challenges keeping it going due to limited resources, etc.
Ed_PSN Moderator: I think the takeaway message is that you should bookmark the VF site and make it our go-to resource. The PAN Network works very closely with the VF.
If you need information, a consultant, or some options to find care...the VF can help you there.
Lamar: I believe VF dues are a tax deduction also.
Joyce: We will absolutely try to help you. Yes. They are tax deduction for US citizens.
Ed_PSN Moderator: Well, Joyce, I know you have to be somewhere. Thank you for joining us tonight. I think the chat room worked really well for us. I look forward to many more chats down the road
I'll be sticking around folks..if you want to chat a bit longer. Ask questions. Just chew the fat for a little bit.
Maltshophop: Ed l like the look of the new chat room, easy to follow.
Joyce: This was a lot of fun. I love this chat room and I think will be a great tool for the other disease groups also. I can see us hosting a lot of individual chats on specific subjects. Thanks again for inviting me. Cheers.