Seeing beauty for a change: Rick Guidotti at TEDxPhoenix

Feb 12, 2012

In his TEDxPhoenix 11.11.11 TEDxTalk, Rick shares the inspiring story of POSITIVE EXPOSURE, and challenges us all to see and appreciate the beauty in our differences.

Positive Exposure was founded in 1998 by award winning fashion photographer, Rick Guidotti.  Rick worked in NYC, Milan and Paris for a variety of high profile clients including Yves St Laurent, Revlon, L’Oreal, Elle, Harpers Bazaar and GQ. He took photographs of what were considered the world’s most beautiful people. But one day, on a break from a photo shoot, a chance encounter on a Manhattan street changed everything. Rick saw a stunning girl at the bus stop – a girl with pale skin and white hair, a girl with albinism. Upon returning home Rick began a process of discovery – about albinism, about people with genetic differences and about himself. What he found was startling and upsetting. The images that he saw were sad and dehumanizing. In medical textbooks children with a difference were seen as a disease, a diagnosis first, not as people.

It has always been about beauty for Rick.  “In fashion I was always frustrated because I was told who I had to photograph.  I was always told who was beautiful.”   It became [...] continue the story

Photo Greater Than 1000: Angelo Merendino at TEDxUSU

Originally Published on Nov 18, 2013 On September 1, 2007, I married the girl of my dreams. Five months later Jennifer was diagnosed with breast cancer. Over the next four years we faced constant change as Jennifer’s illness grew more serious. During this time, Jennifer allowed me to photograph our day-to-day life. Our hope was that these photographs would offer people a more realistic view of life with cancer. Since Jennifer passed in 2011 these photographs—our love story—have been vital to my accepting Jennifer’s death, embracing my own mortality, and finding peace within myself.

Angelo Merendino is a photographer whose photo-documentary, The Battle We Didn’t Choose — My Wife’s Fight With Breast Cancer, has received worldwide recognition. Intimate, honest, and moving, Angelo’s photographs offer viewers a look inside the day-to-day life of a young couple facing breast cancer together. More than a story about loss, this is a story about love and life.

Since his late wife Jennifer passed in 2011, Angelo has maintained a blog chronicling life before, during, and after his experience as a caregiver and now, as a 39-year-old widower. Much like his photographs, Angelo’s posts are open and raw. His hope is to encourage conversation about topics that are [...] continue the story

Fight the stroke

About #fightthestroke is a documentary that tells the story of a child who suffered a stroke at birth. Together with his parents, this boy wants to answer the question of what would happen if, instead of trying to fix something that is broken, we focused our attention on what already works? #fightthestroke is a project by: Familydan.org and Shoot4Change, Francesca, Mario and Roberto D’Angelo, Andrea Ruggeri – ARE YOU SERIES is a Milano Film Festival project, made thanks to the support of Banca Prossima. Find out more at www.areyouseries.com

Choosing what to wear with an ostomy.

April 12, 2014

Personally, I love fashion & clothes and always have done even before my surgery.

Before I had my surgery, I was always worried that it would restrict what I wear but I have not really had to change anything to accommodate having a stoma. I’ve found that the only thing I have had to change is to not wear really tight fitting things like skintight bodycon dresses as it doesn’t leave my stoma enough room to work and increases the chances of leaks greatly. I find that I can still wear close fitting things though, and wear a stoma waistband or a stoma vest underneath tighter fitting garments to help minimise my bag being recognisable through the garment.

Some clothing tips I find work for me having an ostomy are:

Wearing ‘stomawear’ such as a stoma waistband or a stoma vest. I wear the Comfizz waistband most days as a lot of the things I wear are quite close fit, such as skinny jeans/jeggings and tighter tops. (Just type ‘Comfizz’ into google for these). Vanilla Blush also do great stoma underwear (I love the pretty high-waisted knickers!). Also, a lot of ostomates in the UK should be able to claim a [...] continue the story

Under Our Skin – Extended Trailer

 Jan 8, 2008 In the 1970s, a mysterious and deadly illness began infecting children in a small town in Connecticut. Today it’s a global epidemic. A real-life thriller, this Academy Award semifinalist exposes the controversy surrounding the growing and hidden epidemic of Lyme disease. Information and DVD sales: http://www.underourskin.com

 

 

Fibromuscular Dysplasia- Patient Experience, Struggles, and Living with FMD

Nov 11, 2011 Kari Ulrich, a patient with Fibromuscular Dysplasia (FMD), shares her story of struggles before and after being diagnosed with FMD in 2007. Kari reveals details of symptoms, treatments, lifestyle changes, living her life with FMD, and resources available for patients to obtain more information about this often misdiagnosed disease.

For more information on FMD visit FMD Chat, an international nonprofit organization that provides fibromuscular dysplasia support, education & advocacy for patients, family members, caregivers, and healthcare professionals.

 

Genetic Testing

By Kristen Knott

Written May 21, 2014

I have an appointment today to receive my genetic testing results. It has been 3 months since I provided the necessary blood work for the testing. The Genetic Counselor at Juravinski had informed me that results would likely take about four months. We discussed my family medical history and she explained that there were two genetic strains they could currently test for and they were BRCA-1 and BRCA-2. Both genes come with a higher propensity to get other forms of cancer and can be genetically passed to children. I have been preoccupied with this appointment since I received the call for booking. Does it mean something that the results are in early?

I desperately want the results to be negative for BRCA1 and BRCA2. I would hate to have to call family today and provide them with the bad news. Then the worry would begin for both themselves and their children. I feel sick thinking about this. I am tired of surgeries and blood work, yet I have already decided if I am indeed BRCA1 or BRCA2 positive I will have my ovaries removed. I want to avoid cancer in any form ever coming back in my [...] continue the story

Running On Empty

Production Company: Statically Indeterminate Productions Ltd.

Filmed and Edited by: Neil Webb

Running On Empty is a gut wrenching, yet heart-warming documentary short that tells the story of the lengths that one man will go to bring his six-year-old, quadriplegic son back to health.

This 22-minute documentary marks the second film from 24-year-old, award-winning filmmaker Neil Webb. In September 2010, Webb teamed up with Blaine Penny; a 36-year-old Calgarian who was attempting to run a 100-kilometer ultra-marathon over several mountain passes in Alberta, in order to raise awareness for his son’s debilitating disease.

Two years ago, Blaine Penny and his family were living a normal, quiet life until Blaine’s four-year-old son Evan went in for a routine surgery to have his appendix removed. His appendix was fine, but he wasn’t. Evan did not wake up from the surgery and fell into a coma.

After Evan awoke from the coma 5 days later, doctors were perplexed and could not find the root of his illness. Finally, after six months of tests, Evan was diagnosed with a probable Mitochondrial disease, which is a rare and often under-diagnosed disease that affects the cells ability to produce energy. Evan is now six-years-old and can no longer walk, talk, or [...] continue the story

Fundraising as a Survivor

By Kristen Knott

Written April 24, 2014

I am thrilled to announce that Team Wonder Women, made of friends and colleagues will be walking with me at The Shoppers Drugmart Weekend to End Women’s Cancers benefiting Princess Margaret Cancer Center that will be held in Toronto September 6-7, 2014.

In August 2013 I reached out to the women in my life, and told them all that I wanted to give back and raise needed monies for local cancer research. I then proceeded to build the Wonder Women team website and my own personal donations page. I was thrilled when I surpassed my individual fundraising goal of $2000 within a few weeks. I was thrilled and genuinely moved by the people who sponsored me for this event. THANK YOU.

Team Wonder Women now has 10 walkers all who at a minimum will raise $2000 for this event so we will collectively raise at least $20 000. There are a few more friends that may join as walkers, which in turn will increase our team donations. Another friend has worked for the event and has dropped off brochure kits at local businesses to raise awareness. She is using the monies she is paid for this work [...] continue the story

Jill Bolte Taylor’s stroke of insight

One morning, a blood vessel in Jill Bolte Taylor’s brain exploded. As a brain scientist, she realized she had a ringside seat to her own stroke. She watched as her brain functions shut down one by one: motion, speech, memory, self-awareness …

Amazed to find herself alive, Taylor spent eight years recovering her ability to think, walk and talk. She has become a spokesperson for stroke recovery and for the possibility of coming back from brain injury stronger than before. In her case, although the stroke damaged the left side of her brain, her recovery unleashed a torrent of creative energy from her right. From her home base in Indiana, she now travels the country on behalf of the Harvard Brain Bank as the “Singin’ Scientist.” “How many brain scientists have been able to study the brain from the inside out? I’ve gotten as much out of this experience of losing my left mind as I have in my entire academic career.”

Jill Bolte Taylor