In appreciation of Hep B Foundation and online forums

Hi Thomas, I’ve been meaning to write a post after the HBF Gala this year but I go back and forth with medical issues and tend to participate on the forum in spurts unless it’s something shorter.

When @Suwang88 was speaking about some type of conference that wasn’t as technically science minded for lay-people with HBV, that reminded me that I have needed to post this for awhile.

Let me preface by saying that I have only known about the Hepatitis B Foundation for about 2 years or so. Most of my interaction in the CHB community has been on the hb-list and then hepbcommunity. After learning more and more about the HBF, I really appreciate all they have done for all of us over the past few decades. I never even knew how much impact they were making on my life even though I was born with HBV and have most assuredly benefitted from their work.

It’s always so exciting when I participate in some sort of HBV conference and I get to see you or @Joan_Block on video. I know exciting is not the right word, but you are the two main faces I associate with CHB support.

We had talked awhile ago (after that conference you did with that group in Australia) about possibly doing some type of small conference specifically for members of the hepbcommunity. The idea was to have a smaller scale virtual conference that was geared toward the patient. One where we could ask you (a scientist) and Joan (a medical professional) and other experts that would join you, questions that we have. It would be sort of like this forum but live (virtually) and a lot more personal Q&A with less formality and procedure; just any of us asking questions of or even sharing with the experts.

Although, I now know better how much the HBF has done for us, it is in a way that may not be so apparent or at least not in our active daily lives. For me personally, I have gained much knowledge and support from these online communities. I am sorry if I am not saying this well, often times I cannot get my thoughts into written word appropriately. My point is that, I now know how important the HBF has been to all of us even if I haven’t had that much interaction with it, but if I so choose and am feeling well enough, I can interact with this community on a daily basis. So, to me, it is a more tangible support system for me even though I know we wouldn’t have near the science, technical info, treatments, etc. without the HBF.

I know you are such a busy man and have so many functions and responsibilities. I don’t know how you handle all that you have on your plate and also run this forum and community. I wish hepbcommunity could get even more funding and support so that so much wouldn’t be put on you, although I have seen that more and more experts are helping support this community.

At the HBF Gala this year, I donated for the first time. In the notes for the donation, I mentioned this community and you and Joan specifically. It was a nominal donation as I am not a rich man but I did ask that they would put the donation towards this program. I don’t want to make anyone else feel uncomfortable, but is there a way to donate specifically to this community or have the HBF allow for donations to go to this community to help grow its support and also have Q&A type conferences every once in a while? I couldn’t do a lot but I would be willing to donate a small monthly amount. Even if people gave $1-5 if that’s all they could give, or nothing at all if they couldn’t afford it - no pressure. But every little bit helps right? At least maybe it could help fund these small conferences that were limited to registered members of this community?

I hope I explained things well enough. I feel like I am not saying it right but I think you know what I mean from previous discussion. I would really hope that at least you, Joan and a specialist doctor (I guess hepatologist) would participate. Regardless, thanks again for all you do for us with this community. I know it’s out of passion and compassion and voluntary and not for monetary gain. I certainly hope our appreciation gives some compensation for all the hours of every week you put into this.

Thank YOU,

-Paul

3 Likes

Dear @PuallyHBV ,

Thank you so much for the kind words, they really help me feel like the time and efforts we put into these initiatives are worthwhile.

Re: Q&A sessions, the leadership group (composed of me, @Joan_Block, @Suwang88, @chari.cohen, and @jessicah) have definitely put it on our to-do list. As you can imagine, it is a long list and we’re slow to get through them at the moment because of competing interests.

What you and others might be interested in is an event I am organising as president of the Australian Centre of Hepatitis Virology. As part of World Hepatitis Day, we’re running a town-hall style event with a panel of scientific and medical experts, aimed at people with Hep B and discussing what medical research in the viral hepatitis field has done in the last few decades and highlight how far we’ve come in less than a person’s lifetime. Details will come out soon, but I hope to have it recorded and allow people to submit questions for these experts ahead of time, so that the panel can answer them even if it’s outside your timezone.

Re: donations, I am very sure that the Hepatitis B Foundation appreciates your support no matter the actual amount. If you want to donate specifically to this site, here are the details (from our forum golden rules)

With the Hepatitis B foundation page, you can select where you want to direct your donations towards.

Yes, funding is an issue, and we are hoping to get enough to hire someone to help out with a lot of the admin and expansion of the site which would help us reach (and serve) more people that need help. I have already been writing a few grant applications for this; we just have to see how they are received.

And thank you for acknowledging the work of all the people that volunteer their time out of the passion they have for this project. We definitely don’t get any monetary gain out of this work, but are paid in the goodwill of the affected community and knowledge that we might make some people’s lives a bit better.

Yours sincerely,
Thomas

1 Like

Dear Paul, you are indeed so gracious and generous with your praise. As Thomas wrote already, everyone involved with the hepbcommunity.org is passionate about creating a place where people can benefit from each other’s experiences and expertise to make life a little bit easier for those of us living with hep b. It is gratifying and satisfying to read the many posts and to know that we’re all doing our bit to help each other out. Every message is so valuable. Thank you!! Always, Joan

2 Likes