Join us for the 2013 Western Mass Golf Open!

Most people don’t need an excuse to play one of Golf World magazine’s Top 50 public golf courses!  But there’s no better reason to tee it up at the Southwick, Mass., course than the Sixth Annual Western Mass Vasculitis Foundation Golf Open, which benefits the Vasculitis Foundation.

“The Golf Open was started in 2008 as a way to raise money for desperately needed research to find a cure and/or new treatments for persons with vasculitis,” explains Tom Tierney, one of the event’s organizers. His daughter, Katelyn, has Churg Strauss.  Another event organizer is Carl Cieplinski, who has Granulomatosis with polyangitis (GPA/Wegener’s).  Carl and his brother, Todd, and their colleagues and friends organize the annual event.  In addition, more than 50 volunteers will work behind the scenes and on tournament day to create a great event for golfers, sponsors and guests.

“It is important to understand the strength you get from being involved with so many other families who silently battle these lesser-known, but equally devastating diseases,” Tierney says. “It is hard to describe the stress families put up with when confronted with the quality of life issues, each different vasculitic disease presents to the patients and their families.”

The Golf Open will start at 1 p.m. with a shotgun start.  After play is complete, participants will enjoy a dinner at the club’s restaurant. There also will be a raffle and auction to raise even more funds.

For registration form and for more information, click here.

For sponsorship information, click here.

“Fundraising is crucial to finding a cure,” Tierney says. “As a parent, I have been so proud of Katelyn’s courage and determination to see though her treatments in an attempt to find drugs that will work against her disease and make management or cure a reality.”

Adds Cieplinski, who was diagnosed in 2005, “We do not have the luxury of having a well-known, worldwide recognized disease that raises billion of dollars for research. We need to count on our families, friends, coworkers and communities to spread awareness of the diseases that we have and raise money to fund research to find cures or better treatments so that patients can get back to leading ‘normal’ lives.

The VF provides a central location to get information about these orphaned diseases,” he continues. “I credit the information that my wife obtained from the website and the contact she made with Dr. Merkel via the Boston support chapter with getting me the necessary care I needed within hours of being diagnosed and preventing irreversible damage to my vital organs.”

Details:  Monday, September 23, 2013

Location:  The Ranch Golf Club, 65 Sunnyside Road, Southwick, MA 01077

For registration form and for more information, click here.

For sponsorship information, click here.

If you are unable to attend but would like to make a donation, please click on the Donate button.  Thank you for your support!

 

 

Kate’s Story

My name is Kate Tierney and I was diagnosed with Churg Strauss Syndrome in April of 2000. Over the years I have had several surgeries including having two which removed pieces of both my left and right lungs. Over the past seven years I have been involved with research studies and clinical trials that the Vasculitis Foundation has fully supported.

Three years ago I was in a coma and needed newer medicines that could treat my disease and help me to try and live a somewhat normal life. The Vasculitis Foundation helps support research and clinical trials that I would not be alive without.

Co-founding the Annual Western Mass Golf Open is my way of giving back. Please donate to the Vasculitis Foundation today, and you will be providing hope to people just like me.

Thank you!

Carl’s Story

In March 2005, I completed my first half marathon. Little did I know that a much more challenging road lay ahead.

By July I was misdiagnosed with planter fasciitis, Lyme disease and kidney stones. My symptoms worsened. A chest x-ray revealed some “abnormalities” in my lungs and a follow-up CAT scan painted a picture of my lungs that mirrored clumps of cotton candy. I later discovered that my lungs were filled with infiltrates caused by a yet undiagnosed form of vasculitis.

A much awaited appointment with a pulmonologist (lung specialist) pieced my medical puzzle together. After one look at my CAT scan results and a few questions, the pulmonologist wrote on a piece of paper the names of three diseases and recommended that we NOT go on the Internet seeking answers. Blood work returned from Yale New Haven two days later confirmed that I had two of the three – Wegener’s granulomatosis (WG) and Good pasture’s syndrome (GP). We had won the autoimmune rare disease daily double and we had officially entered the Twilight Zone!

The morning after my official diagnosis, I woke to the sound of my wife speaking on the phone with Dr. Peter Merkel from Boston University and two doctors at Hartford Hospital. She told me I needed to go to the ER because my kidneys were failing. I entered the hospital and received a triage of strong medications. I spent the next two years on a prednisone and azathioprine (an immunosuppressant) roller coaster. Finally in 2007, after a significant flare-up, I made the emotionally draining decision to enter a double blind study through Boston Medical Center to test the effectiveness of a new treatment for vasculitis patients called Rituxan. As a study patient, I received intravenous treatments of the drug once a week for four weeks in Boston.

Since 2007, I am thrilled to report that I have been in medicated remission. Aside from taking my “daily vitamins”, I have been able to enjoy a fairly normal life, with the occasional doctor visits and monthly blood tests. Admittedly, when the common cold or virus inevitably creeps up, my wife and I exchange “the look” and hope in silence that there is nothing more to add to this story.

As a vasculitis patient and an advocate for the Vasculitis Foundation, I am thrilled to report that the Rituxan study consisting of 200 patients worldwide concluded in 2009. In April 2011, Rituxan became the first drug to receive FDA approval for the treatment of WG and microscopic polyangiitis.

Thank you for your support of the Vasculitis Foundation, for without it, I along with countless others would not have access to the Awareness, Research or Support!

Vasculitis Foundation

The Vasculitis Foundation is the international organization for patients with vasculitis, their families, friends and the health care professionals who care for them.