Seeking Volunteer Support For Acoustic Neuroma Website

[fbarbera]

Hello AN Community,

I am seeking volunteer support for my website, www.myacoustic.org, which is dedicated to Acoustic Neuroma patients.  Specifically, I am seeking (a) an individual who is willing to transcribe interviews with medical doctors about Acoustic Neuromas, and (b) web design expertise.

A couple of years ago, I created this site to chronicle my experience with AN and support other AN patients facing the difficult situation of how to choose a treatment.  Recently, I conducted and posted an interview with Dr. Steven Chang of Stanford University.  The interview is about 75 minutes long and addresses a wide range of subjects relating to choosing a treatment for Acoustic Neuromas.  You can listen to it under the "Interviews with Doctors" tab.

Currently, the interview is available in audio format only.  I would like to post a transcription of the interview for patients who prefer to read.  I suspect many new patients will prefer to download, print and read the interview.

If you are willing to help other AN patients by transcribing this interview, please send me a personal message.

I also would love support with web design.  Until now, I've done all the coding myself.  As you can see from the site, my abilities are limited.  I would love to create a more clean and professional appearance for the site.  If you are willing to help out in this way, please let me know.

Many thanks and blessings to all of our community for a healthy and joyful New Year!

Francesco

 

[leapyrtwins]

Francesco -

I've always found that this website is such a wonderful place that I've never felt the need to go "elsewhere".

Yes, I read others' blogs and find them very enlightening, but the Forum - and in fact the entire ANA website -  has always been my "home" largely because it's dedicated to AN patients.

I frequent the Cochlear websites and the Cochlear Community because I'm a BAHA wearer and Cochlear volunteeer and I share my experiences there, as well as here, but I've never felt a need to create my own website.

Have you given any thought to contacting the powers that be @ the ANA about incorporating your ideas - like interviews with doctors who treat ANs - into the ANA website?

Jan

[fbarbera]

Hi Jan,

Thanks for your message.  I totally agree - this forum and the ANA in general are the ultimate go-to resource for patients.  My website is a very personal project, something I felt deeply called to create after going through my personal AN experience.  It is my way of giving back.  I've received so many messages from patients who have found the site helpful on their personal journey, and I feel blessed to be able to contribute in this way.  As you have suggsted, I have been in touch with the ANA about various projects, and I hope one day to be more involved with this outstanding organization.

Thank you for your incomparable work for AN patients on this forum.  Your dedication (as well as that of the other moderators) is truly incredible.

With blessings for a wonderful and healthy New Year!

Francesco

[Lainie181818]

Hi Francesco, long time no hear. I think it is a great idea to start your own AN website. The more information we have out there the better. I am sure there are "tekkies" out there who can help you. It would be great if you could meet Nancy,David, and myself for lunch or support meeting with new AN patients. Take care
Lainie.

[leapyrtwins]

Francesco -

I am not a moderator, but I appreciate you appreciating my dedication.

The ANA would be lucky to have you involved with their organization.  Next time they are looking for new Board members you might want to apply.  It was a path I was going down, but sadly it requires not posting personal opinions on the Forum - lest they be misconstrued as the position of the ANA - so I declined.  Someone like you - if you're willing to follow the rules that I wasn't willing to follow -would be a great asset to them.

Just a thought,

Jan