$30,000 fund raiser for Vasculitis Foundation

RALLYALLEY-PTR-100214-01_49084607.jpg

This is an older news item, but I only just came across it today. 

Jason Wadler of Glencoe, Chicago area, ran a fund raising event for the Vasculitis Foundation called Rally in the Alley which drew 225 people. He raised $30,000. The bowling event helped raise awareness of all vasculitis diseases, including Wegener's Disease.

Jennifer Naida of Round Lake, also a fundraiser host, was crowned Mrs. Illinois International in 2010. She was diagnosed with Wegener's in 1983, and she was able to talk to people about the disease, it's symptoms and that there can be hope, given that Jennifer has lived with the disease for 32 years.

You can read the full article here.

Vasculitis foundation video interview is on Youtube

A little while ago I let you all know that Alicia did a Skype interview with Ed Becker on behalf of the Vasculitis Foundation. They have a Youtube channel called vasculitis awareness. This is how the Vasculitis Foundation explains the channel.

The purpose of this effort is to spread awareness by sharing vasculitis stories about some extraordinary people to highlight the impact these chronic conditions have on vasculitis patients and also their families, friends and loved ones. Sharing with the world, the pain, the fear, and even the joy of finally getting a diagnosis and learning what is happening to their body. When you watch these videos, you will learn that people from all walks of life are represented. There is no cure, but with your help there is hope.
— Vasculitis Foundation

There are over 70 videos on the Youtube channel and now Alicia and I are on there too. Our interview is split into two parts. The first video introduces us both and goes on to describe Alicia's initial symptoms and how the Wegener's Disease progressed.

In this video, Alicia and Barry Forshaw from the U.K. talk about the onset of symptoms that plagued Alicia. A persistent cough, runny nose, and fatigue indicated nothing more than a bad cold.

However, a more serious diagnosis was awaiting her. Alicia would soon learn that she had a rare and serious autoimmune disease called “GPA Wegener’s”.

During the initial phase of her illness, her work colleague (later to be her husband), Barry, observed the dramatic and rapid decline of her health. Although they didn’t understand vasculitis, her co-workers realized that she was fighting something extremely serious.

In this short video Barry and Alicia talk about how her life changed rapidly once she began battling vasculitis.
— Vasculitis Foundation

In the second video Alicia and I talk about building this website and writing my book.

In this video, Barry talks about how he wanted to share Alicia’s story to help awareness about vasculitis and let other patients learn through their experience.

He started with a website and eventually undertook the challenge of writing a companion book that included interviews with family, friends and doctors.

In the video, Alicia ironically describes how she had to read the book about her experiences to fill in her lost memories when she was so ill.

They also share photos of their beautiful daughter, Audrey.
— Vasculitis Foundation

Unfortunately our Skype connection wasn't optimal so Ed, who was our interviewer and editor, had to do a lot of work to get the videos up. Thanks for all your hard work Ed!

I hope you enjoy our videos, and if you do please let me know!

 

Register now for the Roadmap to Wellness webinar

If you've been following the Vasculitis Foundation's Roadmap to Wellness Series you might be interested to know that they will be holding their fifth webinar on Wednesday, September 24, 2014 at 3:00 p.m. – 3:45 p.m. Eastern time (USA). 

The founder and principal investigator of the Translational Program in Vasculitis, at the National Institute of Arthritis and Musculoskeletal and Skin Diseases, which is part of the National Institutes of Health (NIH) is Dr. Peter Grayson.

Dr Peter Grayson - Vasculitis Foundation Roadmap to Wellness webinar

Dr Peter Grayson - Vasculitis Foundation Roadmap to Wellness webinar

Dr. Grayson has led several successful clinical outcomes projects and holds a leadership role  with the Vasculitis Clinical Research Consortium (VCRC), where he also completed a fellowship. He focused on research and clinical aspects of vasculitis in that VCRC program. He serves as the representative to a major international collaboration to develop novel diagnostic and updated classification criteria in several forms of systemic vasculitis with the American College of Rheumatology.

His specific area of research includes biomarker discovery and development through gene expression profiling, and other genomic techniques, clinical epidemiology and immunology, disease classification, and clinical trials in vasculitis.

You can read more about the webinar on the Vasculitis Foundation website here.

If you want to participate in the webinar, you can register here via GoToMeeting.

Photograph used with permission from Charles Nadeau.

Vasculitis Foundation interview

I'm bringing you some exciting news today!

Alicia and I participated in an interview with Ed Becker at the Vasculitis Foundation this week. I have blogged about the Vasculitis Foundation previously, and you can read more about the organisation here

The Vasculitis Foundation is an international  organization for patients with vasculitis, including Wegener's Granulomatosis, their families, friends and the health care professionals who care for them. The Vasculitis Foundation advocates for early diagnosis and leading edge treatment for all patients, no matter where they live.

In addition, the Vasculitis Foundation partners with researchers around the world to determine the cause and discover the cure for vasculitis.

The Vasculitis Foundation has a very active Youtube channel that anyone wanting to know more about vasculitis would find extremely useful. Our interview will appear here. Alicia and I talk about Alicia's battle with Wegener's Disease and how and why I wrote a book about her struggle. When the video airs I'll be sure to link to it from this blog.

Wegener's Disease Resources - Vasculitis Foundation

The Vasculitis Foundation was established in 1986 to alleviate the isolation that patients and their families experience when these life-threatening diseases affect them. They say that new and improved treatments and a greater understanding of vasculitis have increased the life expectancy for patients and also improved their quality of life.  They also understand that for many patients, vasculitis becomes a chronic illness, requiring constant and careful management by the patient and his/her medical team.

Transient

The Vasculitis Foundation is an international  organization for patients with vasculitis, including Wegener's Granulomatosis, their families, friends and the health care professionals who care for them. The Vasculitis Foundation advocates for early diagnosis and leading edge treatment for all patients, no matter where they live.

In addition, the Vasculitis Foundation partners with researchers around the world to determine the cause and discover the cure for vasculitis.

The organisation is based in Kansas City in the USA, but does engage with vasculitis sufferers worldwide. They seem particularly good at employing social media to increase awareness of vasculitis in general including an active Youtube channel.

 Patients and families also shared their experiences through their Vasculitis Stories Project. This year they asked “What does living with vasculitis mean to you?” The responses were thoughtful and wide-ranging, proving that vasculitis impacts everyone in its own way. 

Through their chapters and support groups they offer their members the opportunity to meet in-person to learn about vasculitis and share their stories.