Exploring disability, new cultures and self in a virtual realm

Krissy Sinclair: Virtual Worlds, Disability, and New Cultures of the Embodied Self
Krissy Sinclair: Virtual Worlds, Disability, and New Cultures of the Embodied Self, Ethnographia Island

In January 2016, I wrote about an interview with Tom Boellstorff (Tom Bukowski in Second Life),  a professor of anthropology at the University of California, Irvine, and which appeared in that august body’s newsletter, UCI News.

Within A (virtual) world without Parkinson’s, Heather Ashbach discussed Tom’s work, touching on the fact that it is now part of a National Science Foundation funded study examining how on-line environments affect social interaction and self-understanding as well as physical-world experiences of disability. Having commenced in July 2015, this study will run through run through until June 2018, and one element of the work is currently taking place in Second Life at Ethnographia Island. Jadyn Firehawk, one of the participating artists in the Ethnographia Island study, IM’d me about it, prompting me to hop over and take a look.

The formal title of the research at Ethnographia is Virtual Worlds, Disability, and New Cultures of the Embodied Self,  and Tom is co-Principal Investigator alongside Donna Z Davis (Tredi Felisimo in Second Life), a strategic communications professor at the University of Oregon. Donna specialises in mass media & society, public relations, strategic communication, virtual environments and digital ethnography.  The work they are undertaking focuses on the experiences of people with disabilities who are using immersive virtual spaces to represent themselves free of the shadow of any disability, and do things they may not be able to do in the physical world.

In their introduction to the work, Donna and Tom describe it thus:

Since some early human first picked up a stick to use as a cane, people with disabilities have been at the forefront of technology innovation. What can their creative uses of and adaptions to on-line social interaction teach us? The researchers will explore this question by studying how people with disabilities create and interact socially in virtual worlds, and how they use different kinds of devices in their homes to experience these on-line environments.

Donna Z Davis and Tom Boellstorff (Tredi Felisimo and Tom Bukowski in Second Life), co-researchers in Virtual Worlds, Disability, and New Cultures of the Embodied Self, supported by the University of California, Irvine; the University of Oregon; and the National Science Foundation.
Donna Z Davis and Tom Boellstorff (Tredi Felisimo and Tom Bukowski in Second Life), co-researchers in Virtual Worlds, Disability, and New Cultures of the Embodied Self, supported by the University of California, Irvine; the University of Oregon; and the National Science Foundation.

Twenty 32×32 metre studio parcels have been made available to applicants with disabilities, who have been invited to share their experiences, insights, and thoughts on their disability: what impacts has it had on them in terms of their experiences, social interactions, dreams, and how have they used it? How have they used it to change their  experiences living with that disability?

How applicants use their space has deliberately been left open, although some pointers were given as to how they might think about using it: for expression through 2D or 3D art, thought media presentations / displays, as a space in which they can develop art or expression through external media such as blogs, or the creation of interactive spaces designed to give others insight into their experience or as a game – or any combination of these ideas.

Jadyn Firehawk at her installation, Reconstructing Identity After Disability, Virtual Worlds, Disability, and New Cultures of the Embodied Self
Jadyn Firehawk at her installation, Reconstructing Identity After Disability, Virtual Worlds, Disability, and New Cultures of the Embodied Self, Ethnographia Island

The result is a series of studies, widely varied in nature and content, some of which – such as Jadyn’s own Reconstructing Identity After Disability. This is a beautifully presented and moving story of how she has come to deal with her bipolar disorder after the condition left her unable to continue in her career as an assistant professor at the University of Texas, Austin, and how the use of virtual spaces in Second Life and the friends she has made here have empowered her creativity in both the digital and physical realms.

“When I sent in my application to participate in the project, I did not know yet what I wanted to build,” Jadyn says of the installation. “All I knew was, I wanted to create an installation that somehow represents the many-faceted, (re)enabled life that SL has made possible for me, but I had no idea exactly what I was going to build.

“I started looking back in my inventory to things that dated back to my earliest days in SL, and realised it essentially documents my entire time in SL. From that I got the idea of perhaps doing my build as a sort of museum exhibit, telling the story of my time in SL.”

Involvement in the project has been both cathartic and insightful for Jadyn, providing her with a clearer view of the last fifteen years of her life, the changes her condition has wrought and  a understanding of ow she has come to terms with it.

Solas NaGealai: Virtual Worlds, Disability, and New Cultures of the Embodied Self
Solas NaGealai chose to produce a 3D representation of Edmund Blair Leighton’s 1901 painting The accolade, allowing visitors to become a part of the setting, sharing in both her creativity and her love of nostalgia.

“I met Tom and Donna through the Parkinson’s disease support group at Creations Park four years ago, and I’m thrilled to be taking part,” Solas NaGaelai says of her involvement in Ethnographia. “Not just for the creative aspect but to be amongst others that have disability. I have a hunger for learning and adapting, and from what I see so does each individual involved in the project. The insight of dealing with their life challenges to me is a very enlightened experience, and helpful one.”

Solas was diagnosed with a particular form of Parkinson’s Disease known as Young Onset Parkinson’s Disease (YOPD) – the same form of the disease which struck Michael J. Fox. When first diagnosed, she was a full-time fashion designer. However, as the illness progressed, she was forced to leave that career behind. Fortunately, her discovery of Second Life provided Solas with a means to re-engage in her passion for design, notably through her Blue Moon Enterprise label.

For her piece, Solas has created a model based on Edmund Blair Leighton’s 1901 painting The Accolade. It’s an interactive piece in which visitors will be able take free costumes she has designed and dress as either the queen or the knight and take their places within the scene. As such it reflects both the creative freedom Solas has found in Second Life, and offered her the mean to present visitors with the opportunity to share in her love for a bygone era, as depicted by Leighton and his peers.

Slatan Dryke: Virtual Worlds, Disability, and New Cultures of the Embodied Self, Ethnographia Island
Slatan Dryke: Virtual Worlds, Disability, and New Cultures of the Embodied Self, Ethnographia Island

Virtual worlds, as Tom and Donna note, are just a part of the much larger domain of internet technology and on-line presence which we can use to define ourselves and potentially reach beyond our personal limitations, whatever form they may take. But studying the “whole” of the digital environment really isn’t that possible; as such, smaller scale studies like Virtual Worlds, Disability, and New Cultures of the Embodied Self allow researchers to focus down on smaller communities and groups and investigate specifics.

Through it, and the involvement of those participating in it, both Donna and Tom are confident they will be able to present a better understanding about how new on-line technologies influence how we think about our bodies, how we think about social interaction, and how we think about the role of the internet in everyday life, all of which will have implications for improving health care and social support for people with disabilities.

Visitors are welcome to tour the installations, and I recommend taking a look at the accompanying website when doing so – the links are given again below for convenience.

STOP PRESS NEWS

Having opened its doors in November 2015, Ethnographia Island had originally been set to run through until March 2016. However, as I worked on this article, Tom and Donna were in discussions concerning additional funding for the work.

On Friday, February 19th, they were able to tell me that the funding had been confirmed, and that as a result, Ethnographia Island is set to double in size with the addition of a second region.

“This means not only more spaces for individual disabled folks to have parcels for some creative building, but also some larger, collaborative parcels where groups of people with disabilities can let their imaginations run free!” Tom said as they passed on the news to me.

So, if you have a disability of any kind and would be interested in a parcel, please IM Donna (Tredi Felisimo in SL) or Tom (Tom Bukowski in SL), or email them at dzdavis@uoregon.edu or tboellst@uci.edu. They would love to have you participate!

SLurl and Website Details

This article is a joint presentation with the March Edition of Windlight Magazine.

Examining a virtual world without Parkinson’s

Tom Boellstorff and his digital alter ego, Tom Bukowski (image: Steve Zylius / UCI)
Tom Boellstorff and his digital alter ego, Tom Bukowski (image: Steve Zylius / UCI)

There are probably few Second Life residents who keep an eye on blogs and the more well researched media reports on Second Life who are unaware of Fran Seranade’s story.  Now 88 years old, Fran is a keen Second Life resident, who spends time in-world with her daughter and son, enjoying much of what the platform can offer: dancing, Tai Chi, swimming, horseback riding, walking, exploring. All far removed from the physical world, where she suffers from Parkinson’s Disease, which deeply affects her ability to do many of the things we take for granted: such as simply getting out of a chair and walking to the next room.

Fran’s story, and that of Creations for Parkinson’s and their support of Team Fox, the fund-raising arm of the Michael J. Fox Foundation for Parkinson’s Research (MJFF)  first came to my attention in September 2013, thanks to an excellent article in the San Diego Union-Tribune by Pam Kragen. Fran’s story has also been related by Draxtor Despres in his World Makers video series, as well as being featured in numerous other SL-related blogs.

Fran Swenson (Fran serenade in Second Life), seen with her avatar and friends in Second Life
Fran Swenson (Fran Seranade in Second Life), seen with her avatar and friends in Second Life

It is now also the story used to introduce an article appearing in UCI News, the on-line newsletter of the University of California, Irvine, which explores the work of Tom Boellstorff, a professor of anthropology at the university.

In A (virtual) world without Parkinson’s, Heather Ashbach talks to Tom about his ongoing work with Fran and other Parkinson’s Disease sufferers using Second Life, which is now part of a US $276,900 National Science Foundation study that began in July 2015, and will run through until June 2018, examining how on-line environments affect social interaction and self-understanding as well as physical-world experiences of disability.

Tom's work has also been more broadly covered through The Drax Files World Makers #31, which I covered here
Tom’s work has also been more broadly covered through The Drax Files World Makers episode #31, which I covered here

Tom’s work as an anthropologist studying our digital interactions with ourselves and others has already given rise to two books, Coming of Age in Second Life: An Anthropologist Explores the Virtually Human, and Ethnography and Virtual Worlds: A Handbook of Method. With this study, he hopes to build on the knowledge he’s acquired over the last several yeas of study, and also learn which aspects of on-line social interaction are linked to specific disabilities and how differing platforms and devices are utilised.

“Billions of people now participate in on-line environments – social networking sites like Facebook, games, virtual worlds,” he notes in the article. “Since some early human first picked up a stick to use as a cane, persons with disabilities have been at the forefront of technology innovation, so it’s natural that they would be doing creative things in virtual worlds too.”

His examination of Parkinson’s and the effect Second Life has had on those suffering from it is not limited to Fran; the article specifically touches on the lives of Solas NaGealai, who founded the original Team Fox presence in Second Life (and whose story I covered in August 2014), and architect DB Bailey, and they are two among many Tom has talked to within Second Life.

Second Life has provided Solas wearing one of her own gowns
Second Life has provided Solas NaGealai to continue her love of fashion and design, and provided her with the means to directly support MJFF through Team Fox SL.

Solas was diagnosed with a particular form of Parkinson’s Disease known as Young Onset Parkinson’s Disease (YOPD) – the same form of the disease which struck Michael J. Fox.

When first diagnosed, Solas was a full-time fashion designer. However, as the illness progressed, she was forced to leave that career behind. Fortunately, her discovery of Second Life allowed her a way to re-engage in her passion for design, and she founded her own fashion label at Blue Moon Enterprise.

Prior to his diagnosis, DB Bailey was a noted architect who, among other projects, collaborated on the design of Los Angeles’ Walt Disney Concert Hall. Since the disease has forced him to step back from that career, he’s been able to use Second Life as his creative outlet as an architect and artist.

Tom’s work, which has involved in-world and face-to-face interviews and studies, has also touched upon the possible physical benefits some of those with disabilities report as a result of their use of Second Life. In Fran’s case, for example, she his indicated an improvement in her sense of balance and co-ordination as a result of using the platform. This is something Tom has suggested might be down to what is called “mirror neurons“, with Fran’s brain responding positively to the visual stimulus she receives as a result of her in-world activities. However, examining such potential benefits does not form a part of the current study, primarily because Tom is not a medical doctor; but he is of the opinion that they are worth  future examination.

The psychological and sociological benefits of using platforms like Second Life in matters of healthcare are clear, and have been the subject of many studies. With the promise of more immersive VR experiences and opportunities now on the horizon, a better understanding of how different platforms and mediums assist those with disabilities enjoy a richer, fuller life is liable to be of enormous benefit, and also offers an opportunity for broader public discussion on matters of disability and the use of technology.

As Tom himself notes in closing the interview with Heather Ashbach, “disability is a fascinating category of human experience because anyone can enter it at any moment – we’re all just a car accident away. And even if we avoid it, if we live long enough, age will present us with obstacles that limit our ability to function as we currently do. Studying how people adapt through the use of technology helps advance the public conversation on disability and digital technology.”

Altogether, an excellent read, and one thoroughly recommended.

HealthlinkNY: health education through Second Life

HealthlinkNY: using Second Life for healthcare education and patient welfare since 2008
HealthlinkNY: using Second Life for healthcare education and patient welfare since 2008

New York state’s Health Information Exchange (HIE), is an initiative intended to gather patient records from across participating healthcare districts and make them available to doctors, hospitals and healthcare specialists – and the patients themselves – as and when required, in order to greatly improve patient healthcare and treatment in all situations, including emergencies.

However, getting people give their consent to having their personal records and histories to be electronically stored and available isn’t easy. There is often a natural distrust of “big brother” type record systems, even when they are intended for the betterment of those whom they serve.

So how do you persuade people to give their consent to having their records stored and shared at the push of a button? HealthlinkNY has chosen to do so by in part using an infomercial filmed entirely within Second Life.

At under three minutes in length and produced by Pooky Amsterdam’s Pooky Media, with graphics support by Skylar Smythe, Consent and the HIE clearly and concisely spells out the benefits of the HIE programme and how it works. As you can see for yourself here.

Why use Second Life for a project like this? Because it is a proven, cost-effective means of presenting to facilitate qualitative patient education to those who might otherwise be unable or unwilling to access that information due to mobility or other difficulties. This work has been spearheaded under the HealthScape NY programme, initiated by Southern Tier HealthLink New York (now a part of HealthlinkNY) and which has been in operation in Second Life since 2008.

Over the years, this programme, which centres on a 20-region presence in Second Life representing various locations in New York State, has not only allowed HealthlinkNY to produce a range of videos on a number of healthcare issues, but also to reach out directly to patients by staging presentations on chronic illnesses, fitness events, and health assessments, and even interactive, health-based quest.

You can find out more HealthScapeNY and the New York regions in Second Life by reading my articles from June 2011, and January 2015.

Medical Centre granted $3.5 million to study diabetes education in Second Life

Draxtor Despres pointed me towards Second Life shows new promise as virtual forum for diabetes education, an article written by Nidhi Subbaraman for the technical section of the Boston Globe’s on-line edition.

In it, Ms Subbaraman reports on a Boston Medical Centre trial which utilised Second Life to help diabetes sufferers better manage their condition, and which has paved the way for an even more in-depth examination of the use of virtual world environments in matters of personal healthcare.

Nidhi Subbaraman writing in the Boston Globe about Diabetes studies using Second Life
Nidhi Subbaraman writing in the Boston Globe about diabetes studies using Second Life

The trial was initiated by  2009 by Dr. Suzanne Mitchell, a family physician at Boston Medical Centre and assistant professor at the Boston University School of Medicine. The intent was to investigate whether and how virtual group sessions held in Second Life might help diabetes sufferers made changes to their eating habits and lifestyles to better manage their illness.

In particular, the trial involved African-American women, many from low-income families and / or holding down busy jobs. This demographic was specifically targeted because the U.S. Department of Health and Human Services Office indicates that a quarter of African-American women over age 55 have type 2 diabetes, which is a significantly high percentage.

Half of the study participants attended hospital classes to help them cope with their condition, the other half were provided with computers and modems and shown how to access Second Life and attend classes in-world. As Ms. Subbabaman notes:

Some days the virtual group “met” at the Second Life BMC classroom, but the group also took field trips into the on-line world. Once, the course leaders led a session on diet and explained how slow, mindful eating was one way to control portions and manage diet. The participants found that when their avatars sat down to eat at the cafeteria location, their utensils moved very slowly, echoing the lesson. Another time the group met at an exercise facility within Second Life, where participants could try out the treadmill or exercise bikes, or take a swim.

Not only did the trial reveal the participants attending virtual activities faired at least as well as those attending regular hospital classes, it also showed that they formed friendships and their own support network, swapping recipes, and trying to encourage friends to join them in-world as well. Most interestingly of all, the study suggested that those participating in the virtual aspect of the study reported exercising more than the group that met in class, suggesting the virtual experience might result in lasting lifestyle changes.

This isn’t the first time that activities in Second Life and virtual environments like it have been shown to have a positive impact on people’s lifestyle choices. In 2012, for example, I reported on a study led by Dr. Elizabeth Behm-Morawitz at the University of Missouri which showed that people who have a strong sense of self-presence with their avatar enjoy an improved self-image and took better care of themselves health-wise, and tended to enjoy better relationships with others.

Dr. Suzanne Mitchell
Dr. Suzanne Mitchell

However, as Ms. Subbabaman reports, the work carried out by Dr. Mitchell and her colleagues has now resulted in the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) awarding them a US $3.5 million grant to finance a further 5-year study into how the use of Second Life can help people diagnosed with diabetes better manage their condition.

“We know that in order to actively participate as partners in healthcare, patients with diabetes need self-management support,” Dr. Mitchell said in a BMC press release announcing the grant and the study. “What is remarkable about this study is we’ll be educating and interacting with some of the patients, and they’ll be interacting with each other, all through group visits in a virtual world.”

As with the initial trial, participants will be placed in either the control group (classroom education) or asked to join Second Life. Those involved in the Second life element of the study will not only be monitored to see how participation in in-world group session helps them better understand their condition, but also how the relationship with their avatar in general has an impact on their self-care and willingness to undertake lifestyle changes.

In this Dr. Mitchell and her colleagues are very keen to chart what is called the “Proteus Effect”. This is a term coined by Nick Yee in his 2014 book, The Proteus Paradox: How Online Games and Virtual Worlds Change Us– and How They Don’t to define the increasingly complex relationship we have with our digital Doppelgängers, and how it can have a profound and often positive effect on us (also see my article from January 2014).

The Proteus Effect was very much in evidence during the original BCM trial, and was also the effect noted by Dr. Elizabeth Behm-Morawitz’s study, so Dr. Mitchell is keen to explore how deeply it may affect and benefit people afflicted with diabetes.

Currently, it is estimated that some 387 million people globally live with diabetes, and the World Health Organisation estimates that the disease could be the 7th leading cause of death by 2030. given this, studies like the one announced by Dr. Mitchell and her colleagues could offer important new insights into the ways and means by which virtual world environments could encourage better self-management for the disease.

What’s more, it is possible the results of this study could be applicable to helping people better manage a range of long-term illnesses and conditions for themselves and alongside of medical support.  As such, it will be interesting to see how this study progresses, and I very much hope that I’ll be able to carry further updates on the study in the future.

Further Reading

Don’t forget that 2015 marks the first Team Diabetes season in Second Life, raising money in support of  the American Diabetes Association. In particular, November 2015 will see the Art in Hats event, which will lead up to World Diabetes Day. on November 14th. I’ll have up-to-date news on activities occurring throughout Art in Hats in due course.

A perspective on avatars and identity

Veronica Sidwell in Second Life (image: Veronica Sidwell, as used by VICE)
Veronica Sidwell in Second Life (image: Veronica Sidwell, as used by VICE)

On Wednesday, April 15th, Xiola Linden Tweeted about an article that appeared in the Motherboard section of the VICE web magazine which makes for an interesting read.

Avatar IRL is a piece  by Cecilia D’Anastasio focusing on the question of avatar identity, and how it can work both ways – not only does it allow us to create and project an identity into virtual mediums, be they immersive worlds like Second Life, MMORPGs or through “traditional” text-only chat forums, it can sometimes be that the impact of engaging in such environments can often have an impact back on our real-world selves; shaping and influencing who we are in the physical world in what is broadly termed “identity tourism”.

Cecilia D'Anastasio: writing on identity in the digital age
Cecilia D’Anastasio: writing on identity in the digital age (image via Twitter)

The term has it roots in the 1980s, when it was used to “examine the ways in which tourism intersects with the (re-)formation and revision of various forms of identity, particularly ethnic and cultural identities”.

In the 1990s, Lisa Nakamura, who gets a fair mention in the article, broadened the term to encompass the way in which on-line activities – notably MMORGs – were encouraging more and more people to experiment with matters of identity and self-definition. It is her work which appears to have given D’Anastasio the idea for Avatar IRL.

The article is a part of a wider series within Motherboard entitled Goodbye Meatbags, which focuses on “the waning relevance of the human physical form”.

In order to frame the piece, D’Anastasio placed a request in the SL forums asking if people would be willing to share their own stories on the issue of identity tourism. At the time, the request provoked a mix response (indeed the article itself has provoked much the same). From the responses she received, D’Anastasio selected the story of Veronica Sidwell, a male-to-female transsexual, to serve as the introduction and initial examination of self-identity and the deep sense of identification many have with their avatar – and how that identification can loop back into their physical lives; in this case, allowing Veronica to seek to transition her physical self, adopting the name of her avatar in the process, in recognition of the role she feels it played in allowing her to do so.

Veronica’s story is related with respect, and serves to springboard the article into its wider discussion which, as mentioned above, reviews Lisa Nakamura’s initial studies into matters of identity (which also delved into aspects of stereotyping and negative reinforcement which did – and still can – occur), before moving on to look at the work of Nick Yee and Tom Boellstorff, and their ongoing studies into the myriad questions of identity and self-definition which arise from our increasing ability to interact through a wide range of digital mediums and the levels of anonymity that often afford when doing so.

Nick Yee (l) and Tom Boellstorff
Nick Yee (l) and Tom Boellstorff

Both of these names will hopefully be familiar to regular readers of these pages. I covered Nick Yee’s work back in January 2014, and his book  The Proteus Paradox: How Online Games and Virtual Worlds Change Us– and How They Don’t, is a recommended read for anyone interested in the increasingly complex matters of identity and our relationships with our digital selves and how we relate to the digital identities of those around us. For those not enticed by his book directly, I’d recommend at least reading Virtual worlds Are Real, a piece he wrote for Slate magazine from January 2014, and which served as the springboard for my article on his work.

I’ve similarly made mention of Tom Boellstorff in the past. His research has covered many aspects of identity and the question of self in the digital arena, and he has written two books on the subject directly focused on Second Life, Coming of Age in Second Life: An Anthropologist Explores the Virtually Human, (Princeton University Press, 2008), and Ethnography and Virtual Worlds: A Handbook of Method (Princeton University Press, 2012, co-authored with Bonnie Nardi, Celia Pearce & T. L. Taylor), and he is also known for his involvement in the story of Fran Seranade / Fran Swenson. Tom also featured in a Drax Files Radio Hour interview which, if you haven’t heard it before, I do recommend.

D’Anastasio covers both Yee’s and Boellstorff’s work as a means of illustrating the osmotic process which can work both ways: that as much as we seek to build and define our digital identity, so the experiences we gain, the interactions we have through those digital projections can also seep back into the flesh and bone, influencing us and further shaping our self-identity.

Avatar IRL has been critiqued for focusing on matters of “sexuality” rather than “identity” – D’Anastasio also relates the experience of Dale, a male-to-female transsexual engaged in World of Warcraft. I’m less than convinced such critiques are valid given the overall context of the article. More to the point, what is a person’s quest to explore, understand and ultimately to be their desired gender, if not a matter of identity?

While there are no ground-breaking revelations in the article – at least for those of us already engaged in environments like Second Life and World of Warcraft, etc. But the piece does provide a good opening for those who might be curious about identity in the digital age, and who might want to delve a little deeper into the subject.

September 20th: two special events in support of MJFF

The Lefevre Mansion, March 2014The LeFevre Mansion, will host the 2014 Team Fox SL Autumn Gala on Saturday September 20th

Saturday September 20th marks two special events in support of Team Fox and the Michael J. Fox Foundation for Parkinson’s Research, and they extend warm invitations for you to attend.

Team FoxSL Autumn Gala

The Team FoxSL Autumn Gala will be taking place throughout the day in the ballroom of the stunning LeFevre Mansion, the event’s sponsor. Starting at 10:00 on Saturday September 20th, it will feature fashion shows, live music and dancing, and more:

  • 10:00 SLT:  fashion show hosted by BLVD  featuring designs by Solde Rothmanay, Solas naGealai, Dainie Fraina and Kylie Sabra
  • 11:00 SLT: a live music performance by Quar
  • 15:00 SLT: a live music performance by Mankind Tracer (Seth Regan)
  • 18:00 SLT:  fashion show hosted by BLVD  featuring designs by Solde Rothmanay, Solas naGealai, Dainie Fraina and Kylie Sabra
  • Plus – throughout the day – a silent auction with amazing prizes and fashion designs.

So be sure to make time to pay the gala a visit, attend one of the shows, join with the dancing and bids for the things that take your fancy in the auction? In fact, given the location, why not spend the time between events exploring the magnificent mansion and its parklands? There is much to see, as I noted back in March 2014.

TeamFox SL was founded in 2008 by Solas NaGealai, and was the first official representation for Team Fox, the grassroots fundraising organisation for the Michael J. Fox Foundation for Parkinson’s Research (MJFF), in Second Life. Team Fox SL is dedicated to raising funds for the MJFF, disseminating information about the disease, and providing support for those diagnosed with the illness and their families. 100% of all donations received by Team FoxSL goes directly to Team Fox and the MJFF.

As one in twenty of the 8 million Parkinson’s sufferers worldwide is below the age of 40 – as were both Michael J. Fox and Solas herself when they were both diagnosed with the disease – a particular focus of TeamFox SL’s activities is that of Young Onset Parkinson’s Disease (YOPD), and you can read more about their work through my recent article and chat with Solas.

Bilbo Baggins Birthday

The Branwen Arts hobbit hole will host Bilbo Baggin's Birthday on behalf of Creatiosn for Parkinson's
The Branwen Arts hobbit hole will host Bilbo Baggins Birthday on behalf of Creations for Parkinson’s

Bilbo Baggins Birthday, which is being held in support of Creations for Parkinson’s, will be held at the Hobbit Hole on Bran and hosted by Branwen Arts. Coinciding with Tolkien Week, the Birthday will celebrate a hobbit’s life in literature and offer a feast of storytelling kicking off at 11:30 SLT on Saturday September 20th:

  • 11:30: Caledonia Skytower – Introduction & Dinner with Dwarves (from “An Unexpected  Party”, The Hobbit)
  • 12:00 noon: Kayden Oconnell – Meet the Trolls (from “Roast Mutton”, The Hobbit)
  • 12:30: Corwyn Allen – Riddles in the Dark (from the chapter of the same name, The Hobbit)
  • 13:00: Kayden Oconnell – The House of Beorn (from “Queer Lodgings”, The Hobbit)
  • 13:30: Luna Branwen – Bilbo Meets Smaug (from “Inside Information”, The Hobbit)
  • 14:15: Caledonia Skytower – A 111th Birthday Party (from “A Long Expected Party”, The Fellowship of the Ring)
  • 15:00: Dubhna Rhiadra – Bilbo & Frodo in Rivendell (from “Many Meetings”, The Fellowship of the Ring)
  • 15:30: Aoife – Leaving Middle Earth (from “The Grey Havens”, The Fellowship of the Ring)

Creations for Parkinson’s grew out of the work of Barbie Alchemi and her brother, AlmostThere Inventor, in building a place in Second Life they could share with their mother, Fran Serenade, who had been diagnosed with Parkinson’s  – a disease which had also claimed the life of her husband. Today, Creations Park offers a range of locations above and below the waves which are open to visitors to enjoy and explore.

Creations for Parkinson’s holds events throughout the year, often in collaboration with Team Fox SL, and 100% of all donations received goes directly to Team Fox. You can read more about Fran and Barbie’s story through this blog, or witness it through the award-winning Drax Files World Makers video of their lives.

About the Michael J Fox Foundation for Parkinson’s Research and Team Fox

The MJFF was founded by Michael J. Fox after he had been diagnosed with Young Onset Parkinson’s Disease (YOPD) when just 29. He refers to it as a business in the business of going out of business – by finding the means to combat Parkinson’s more effectively and bring about a lasting cure.

In the fourteen years since it was established in 2000, the MJFF has raised over $400 million, money which has been put to use funding a broad-ranging and aggressive programme of research into a number of areas related to the disease: defining it, altering it, investigating untreated symptoms and developing new tools to assist in further research activities.

Founded in 2006, Team Fox is the grassroots fundraising arm of the MJFF, established in response to requests from Michael’s fans and other Parkinson’s sufferers to help support the Foundation’s work. To date, it has raised some $27 million which has gone directly to the Foundation’s research activities.

Related Links