The Vasculitis Foundation is your trusted vasculitis research advocate. As the largest private funder of research on vasculitis, we collaborate with researchers around the world to fund the most promising studies. We are proud to work with esteemed research organizations such as the Vasculitis Clinical Research Consortium. The VF proudly provides grants to support pilot studies researching:
All with the goal of improving the quality of life for patients with vasculitis and ultimately finding the cause/s and cure for vasculitis.
One of the greatest gifts the Vasculitis Foundation gives to research is not financial. The VF goes a step beyond funding and brings important, cutting-edge research to patients; bridging the gap between patients and researchers. Every year the VF hosts conferences, chapter meetings, and symposiums all with the overarching objective of bridging patients and researchers. The conferences are just one way the VF is able to bring researchers, clinicians, and patients together to share recent findings and discuss the direction of vasculitis research for the future. Patients need to be connected to the available research and, conversely, researchers need to be in contact with the patients their research intends to help. The VF is honored to facilitate the conversation between researchers, patients, family members, and other stakeholders.
Use a VF bridge and start the conversation with vasculitis researchers!
Register for a VF patient conference in the fall or for the 2015 VF Symposium in the spring
Hover your cursor over the date and person’s name, and you will be able to read additional informational about that person.
Realizing there were other people out there having the same daily struggles that I do somehow made it easier to get up every day. Someone finally understood me, and I discovered that I never had to feel alone again. The People who work and volunteer for the VF are such compassionate and caring people who are truly dedicated to educating people about vasculitis and supporting them throughout their difficult journeys.
They are also dedicated to funding research about these diseases to better understand them and to try to make the lives of those of us living with Vasculitis a little bit easier. The Vasculitis Foundation gave me the one thing stronger than my disease will ever be, they gave me hope. I have hope for a better and brighter life because of the VF.”
Watch Kate’s Extraordinary Vasculitis Video here.
For the last 15 years, Cornelia Weyand’s research has focused on large vessel vasculitis with a special emphasis on giant cell arteritis (GCA), which is caused by immune cells that invade and attack arterial wall cells. With her latest project, she hopes to pave the way for introducing a new class of therapies.
“In this study we will examine how the immune cells are activated in the first place; how they respond to activation and how immune activation translates into the injury in the blood vessel,” Weyand explains. The study gives special attention to a new type of immuno-modulatory drugs, called the JAK inhibitors, which can suppress cellular activation. Experiments will explore the potential of such new inhibitors as a new treatment approach in GCA.
The new therapies will be tested in a model system created by grafting human arteries into a mouse model and infusing the blood cells from the patients into the mouse. “Through this system we can create ‘GCA in a dish’, with real patient cells and real human arteries,” she explains. “Doing so with the cells from a specific patient, we can test how this patient would react to the therapy.”
The VF grant will allow investigators to do a pilot study to create the necessary first data set that helps direct further research. “Support that comes through the Vasculitis Foundation is critical in securing that research programs can continue their work,” she concludes.
Grantee: Cornelia Weyand, professor of medicine, Stanford University School of Medicine
Award: $50,000 for one year.
Topic: Small molecule therapeutics in Giant Cell Arteritis
In honor of Mother’s Day, the VF is recognizing Jill Hulbert who, along with her husband Matt, care for their two young children–both of whom have been diagnosed with Polyarteritis Nodosa.
From Jill Hulbert:
“My name is Jill and I am a mother of 2 children with PAN. I also had a grandmother with the diagnosis. I believe in my family we have a genetic component that runs through the family. We recently have been invited to the NIH to participate in genetic testing to look for a gene mutation. We hope this leads to a better understanding and treatment of the disease. I spoke with Dr. Grayson from the NIH last week and he said “we have been looking for each other for a long time”. I told Dr. Grayson, “oddly that makes me very happy” and he then replied “it should”.
Research is the cornerstone of gaining knowledge of diseases in order to treat them.
My son Jake asked me last week if the purpose of his journey in life was to find the cure for PAN. I replied “that would be something!”
View Jill’s Extraordinary Story and be inspired!
Nicole is the leader of the Dallas VF Chapter. Her commitment to supporting patients with vasculitis has been essential to patient outreach efforts in the greater Texas area.
The sense of community you feel from sharing and becoming involved with your local VF chapter is invaluable. I’ve learned so much from the folks in our group. Additionally, I always encourage patients to bring their care givers and/or family. In many ways, it can be just as hard on them as it is for the patients. You are surrounded by people who can empathize with what you are experiencing whether it be from the illness, the medication or a combination of them both. It’s a safe and confidential place to speak, too. If there isn’t currently a chapter in your city, think about starting one yourself. Nicole Guerin.
Christine was diagnosed with Granulomatosis with Polyangiitis (GPA/Wegener’s) in 2013. Her journey to a final diagnosis, like so many other patients with vasculitis, was a long and arduous process. For years, Christine lived with the symptoms of GPA without a diagnosis. Christine endured persistent sinus infections, treatments for severe Pneumonia, emergency surgeries to remove her gallbladder and consequent Pancreatitis, without a diagnosis of GPA. In December of 2012 Christine was rushed to the ER with severe flu-like symptoms and her physician found extremely high levels of protein in her urine and blood. She was admitted to the hospital that day. After a trying week of testing, a kidney biopsy finally broke ground for a diagnosis. Christine was referred to Massachusetts General Hospital in Boston to see a specialist. It was there, that she finally received a confirmed diagnosis of GPA. Since that day her life has not been the same.
Though the symptoms of GPA infringe on Christine’s life, she refuses to surrender her positive outlook and commitment to embracing the things in life that are truly important. Christine shared this about her diagnosis and experience with GPA:
Because of this disease its given me new eyes to view the world with, and the people in it. I realize now the true meaning to life, what’s REALLY important, and what’s not.
It’s also brought me to the Lord, and my faith has became stronger because of this disease. Everything happens for a reason, and I believe that with enough awareness there will be a cure someday. I don’t think anyone who is given this grim news should give up hope, and determination to live for tomorrow because tomorrow is bright, we gotta make the best out of every situation. (Christine David)
Dr. Rennie Rhee, University of Pennsylvania, is the 2014 Vasculitis Foundation Fellowship Recipient. As an investigator at the University of Pennsylvania, Rhee works with Dr. Peter Merkel and Dr. Antoine Sreih, among others, to understand more about vasculitis. Rhee hopes to determine whether outcomes, such as survival and development of end-stage renal disease, are improving in patients with ANCA-associated vasculitis over the past 25 years. She is also interested in the impact of early diagnosis and treatment advances on these outcomes.
“Understanding the past helps us move forward,” she explains. “We want to know if all the advances in the field of vasculitis are translating into improvements in patient-important outcomes in a real-world setting. We can also evaluate which has had a larger contribution to better outcomes: earlier diagnosis or advances in therapy. Understanding this will help identify areas in need of more research.”
Shannon is the VF’s Patient Support Coordinator. Shannon’s warm, compassionate personality, and dedication to helping patients, has made her an exceptional resource for patients with vasculitis. When asked to share why she likes to work for the VF, Shannon quickly responded, “Well that is an easy one!” Shannon continued:
I have worked for the Vasculitis Foundation for almost twelve years and I am fortunate enough to be the Patient Support Coordinator. The patients have been an eye opening and positive learning experience for me. I have made new friends, and it is my passion to help those with vasculitis on their journey. I have an important reason to get up every morning, not knowing what it will bring, but always knowing it will be a good day learning a new story and helping any way I can. So many of you thank me, but it is I who should thank you as you have made me a better human being.
My name is Allison, and I am a professional violinist in Akron, Ohio. In 2011, I began a personal awareness campaign called Violin For Vasculitis, where I travel to each state in the U.S. giving free concerts to benefit patients and educate the public about vasculitis. My inspiration is rooted in my personal struggle with Granulomatosis with Polyangiitis (GPA/Wegener’s), with which I was diagnosed as a teen almost a decade ago.
I truly believe that each individual has the capacity to harness their personal talents and use them towards a cause – for me, that talent is music, and that cause is vasculitis. V4V has taken me to 15 states so far, with 5 more in progress for the 2014-15 year. In my travels I have met hundreds of people – doctors, patients, caregivers, classical music aficionados – who enthusiastically respond to my mission, and even begin their own awareness campaigns. It is empowering for all of us to realize that there is a global community working together towards this common goal. We are on fire for the cause, and can see every day how our efforts make a difference!
“In the upcoming year, V4V is slated to visit West Virginia, Texas, Ohio, and Maryland.”
Learn more about Allison and watch her perform some beautiful music:
Extraordinary Vasculitis Story: Allison Lint
V4V featured on CNN’s “Human Factor”
Website and travel blog: http://www.ViolinForVasculitis.org
Official Facebook page: https://www.facebook.com/violin4vasculitis
Story on the Oberlin Conservatory alumni page: http://stories.oberlin.edu/2/music-conservatory/allison-lint-09.shtml
In early 1998, Florence Becker began to exhibit her initial symptoms as frequent nosebleeds, a low grade fever that went on for weeks, and increasing fatigue. Numerous tests and doctor visits didn’t give any clues to the cause of declining health. Finally, in July 1998, she was on the verge of collapse and she went into the ER at a hospital in Pittsburgh. The attending doctor gave Florence and her husband Edward some startling news: Her kidneys had all but shut down and her blood pressure was dangerously high. A week passed as doctors stabilized her, but a diagnosis was elusive.
Finally after a kidney biopsy her doctors confirmed that Florence had Polyarteritis Nodosa (PAN). Unfortunately the disease had advanced to the point that it was difficult to stabilize her rapidly declining health. After spending two months in the hospital, Florence passed away on Sept 12, 1998.
Her passing was devastating to her family, but it was also the catalyst for something good to follow. Her son Ed had been frustrated by the lack of information on the Internet about Polyarteritis Nodosa.
He spent months gathering up links to as much information as he could find on the disease and centralized it on a website. Within months of its launch a couple hundred patients found his website. Many of the visitors wanted to talk with other patients so Ed established the PAN Support Network (PNS) in 1999. The PSN started out with 100 members. Today it has over 700 patients, caregivers, and researchers worldwide.
To visit the PSN website and learn more about PAN, click HERE.
The VF would like to feature the newly formed West Central Ohio Chapter. After nearly a year in creation, Glen Massie, the West Central Ohio Chapter founder, is ready to host the first official Chapter meeting. With the support of nephrology specialist Dr. Ahsan Ullah, the Chapter is eager to provide education, support and resources to patients with vasculitis within a 150 mile radius of Springfield, Ohio.
Shane was diagnosed with Granulomatosis with polyangiitis in 2010. GPA has significantly impacted Shane’s life and education, interrupting his undergraduate degree program and postponed his graduate program. Shane shares, “Despite severe issues with GPA over the years, dyspnea in accordance with subglottic stenosis has been my biggest battle, growing up as a competitive, physical individual. Not being able to do as much as those around me, feelings of worthlessness, depression, etc.”
Despite the symptoms that hold his energy captive and challenge his feelings of self-worth, Shane sought out support and community and has generously shared his story with the VF. He writes, “I may be a rarer case in an already rare subspecies, but I am not alone.”
Shane has also chosen to participate in a 3-4 year study comparing Rituximab with Azathioprine as Maintenance Therapy in Relapsing ANCA-Associated Vasculitis. Shane describes the study and his future care plan:
“I have completed another 4 week round of Rituximab and I am slowly tapering off of prednisone until October (as long as everything goes well!). If my winter flare turns to a technical and clinical “remission” I will continue on with the study I am doing, and commence to a double blind 4 week dose (in August) of either Rituximab or cellacept. This is a worldwide study, and the principle investigators are my new rheumatologists through UPMC. I will attach the study for more information for you! My upper respiratory issues have improved since March/April, and I am currently just adjusting to short-term side effects of prednisone and Rituximab gradually kicking in. Once I taper off of prednisone, I will be addressing long-term maintenance of Gastro-esophageal acid reflux with Nissen Fundoplication surgery.”
Shane is a living example of how patients with rare disease can turn their experiences into change for the greater community.
By sharing your story, our communities grow and we learn from one another. By participating in research, you are contributing to progress in disease prevention and treatment.
This weekend we are featuring James and his father Peter. James and Peter are both exceptional ambassadors for the VF in South Africa. James has Granulomatosis with polyangiitis (Wegener’s/GPA) and together, he and his father share their experience with vasculitis and their relationship with the VF.
“When you become ill with a rare, unknown disease like Vasculitis… the world literally becomes lonely place overnight. No one knows or can appreciate what you going through and facing for the rest of your life. You need support! Support from somewhere and someone who understands, appreciates and acknowledges what you going through. The Vasculitis Foundation (VF) does that for you. They have a team of people, patients and doctors who have either personally experienced what we going through, have walked the journey themselves with a loved one, or have treated and provided medical advice to people with our same condition. The VF provides us with the opportunity to learn about our disease, and enables us to connect and share our stories with someone. Having someone to talk to during dark times cannot be overestimated.
If you a have one of the vasculitis diseases, joining the VF should be compulsory, no optional.
Over the years the VF has helped me immensely with information on my condition and support, and I have met some amazing people along the way. I was hesitant about attending the VF Symposium in Baltimore some years ago. I had to fly halfway around the world just to get there, but was so worth it for me – the patient, and my wife – the caregiver. Meeting and talking to Drs and other patients was such reassuring process that I was going to be ok. With no formal support group in South Africa, the first thing I do when people looking for help and guidance call me is refer them to the VF. It’s the best, and probably the only place they will find and get the answers to all the questions they have about the disease they have just been diagnosed with, think they may have. It is not only remarkable what they do…but how they do it.”
Peter offers a parent’s perspective:
“It was terrifying for us when James became ill with vasculitis. He was a picture of health and fitness. A fitness fanatic on the brink of a year back at university to tackle his MBA When the doctors mentioned vasculitis as a possible reason for sudden setback, we didn’t have a clue what they were talking about. An internet search to try and understand what it was did nothing but introduce more uncertainty into our lives, but it introduced us to the VF. Christy Abele of the VF (a lady we will always remember) responded with such grace and calmness to our panicky communications. She put us in touch with some vasculitis sufferers in this part of the world who in turn were of a great help to us. I simply don’t know how we would have coped if it had not been for Christy and the VF. James and Kath, his wife, subsequently met Christy in Baltimore.
What we now want to do here on the southern tip of Africa is do what we can in order to assist others who find themselves in the same predicament. We have developed a data base of people locally with vasculitis, and medical practitioners with experience in the field, and are able to put them in contact with each other. It’s our small way of saying thanks to the VF and its wonderful bank of helpers”
In observance of Memorial Day, we are featuring Curry L. Koening, M.D., M.S. Dr. Koening is an Assistant Professor of Medicine at the University of Utah and Salt Lake City Veterans Affairs Medical Center. He is a Rheumatologist whose primary clinical interest is in vasculitis. Dr. Koening is also a Steering Committee member for the Vasculitis Clinical Research Consortium.
Jane is the Leader of the Atlanta Vasculitis Support Group. Jane’s husband Joe was diagnosed with Granulomatosis with polyangiitis in 1996. Joe has been in remission for the past three years. Jane and Joe have converted their experience with vasculitis into something positive- a thriving support group for patients with vasculitis in Georgia.
Celeste is a Patient Advisor for the Vasculitis Patient-Powered Research Network and is the Patient Program Manager for Patient and Family Centered Care at the University of Michigan Health System. Celeste has dedicated her personal and professional life to improving the quality of care and quality of life for patients and families with the principles of Patient and Family Centered Care. Celeste has extensive experience as an advocate and is a visionary for true partnership between patients and health care providers. Her achievements as an advocate are deeply rooted in her own experience with illness and navigating the healthcare system with a rare disease.
Celeste was diagnosed with GPA at age 17. The disease had shut down her kidneys the summer before her senior year of high school, and transitioned her from a college seeking young woman into a lifelong End State Renal Disease (ESRD) patient. Celeste received a transplant in 1986 only to have the kidney fail in 1995 and was transitioned back to dialysis. Her struggles and tribulations with GPA have been devastating, yet Celeste has transformed her experiences into the fuel that is now powering a movement empowering patients to be active partners with health care providers.
“As a chronically ill patient I have ample opportunity to feel utterly overwhelmed and alone. Nothing makes me feel more vulnerable and isolated as when I am discussing my diagnosis with those health care professionals who do not know how to help, or have treatment options for me. Imagine if health care providers partnered with patients and families to understand the burden of illness, and together took the opportunity to collaborate to establish best practices.
I have lived Patient and Family Centered Care principles, dignity and respect, sharing information, and being an active participant in my health. My life has meaning and my experiences are valuable.”
On Tuesday, May 27, Governor Nathan Deal presented members of the Atlanta Vasculitis Support Group with the 2014 Georgia State Proclamation in honor of Vasculitis Awareness Month. Melissa Bell, a longtime VF member, organized the annual event, which gives members the opportunity to discuss with the governor the need for greater awareness and understanding of vasculitis.
In May 2011, Melissa was diagnosed with Primary Angiitis of the Central Nervous System. Melissa experienced severe headaches, fatigue, confusion, and forgetfulness. After her first stroke, Melissa was no longer able to make decisions for herself, suffering from short-term memory loss. In 2014, after lowering her Prednisone dose, Melissa had a second stroke. The second stroke resulted in complete loss of function on her right side. The list of complications resulting from vasculitis is extensive. Yet, it is family support, perseverance, and strength that shine through Melissa’s story. Her husband and daughters care for Melissa with exceptional patience and love. Melissa labors to improve her quality of life and mobility with physical therapy with the desire to play with her three grandchildren. With her inner strength and love for her family, Melissa is bravely facing vasculitis.
Paul rang in the last week of Vasculitis Awareness month with an awareness table at a Tampa Bay Rays game! The awareness table at the Community Corner on May 25, 2014 was a big success. Paul writes,
“The Rays beat the Boston Red Sox 8-5 to complete a 3 game sweep of the defending world champions. Attendance at the game was a little better than we hoped, 26,199. We had over 200 people stop by to enter the drawing for a Tom Foley (Rays 3rd base coach) autographed baseball. Last year, only one person was really familiar with the vasculitis family of diseases. This year we had about four people who were aware of the diseases. Most of the people who stopped by were interested in learning more about the disease. We handed out all of the pins and bracelets, We handed out many brochures and Pat and I will be distributing the rest of them to several physician offices in the area. Both Pat and I appreciate your support.”
Since its creation in 1999, the Polyarteritis Nodosa Support Network (PSN) has grown into one of the largest online web resources for PAN. While taking a web design course, Ed Becker, needed to create a basic, functioning site for certification. He remembered the extreme frustration of trying to find relevant info on PAN on the Internet a year earlier after his mother was diagnosed with vasculitis.
Unfortunately she passed away from PAN in September 1998, but the need for a central website with information about the disease remained.
In February 1999 he published a single web page containing links to articles about PAN. After getting his certification he promptly forgot about the website- at least until he checked the website a few weeks later. To his surprise, Ed found that more than 100 people had visited the website. Moreover, visitors left comments on the guestbook expressing gratitude that such a website was available for patients.
Many of the comments indicated there was a desire to communicate with other patients who had PAN.
He created the PAN Network Forum using a Yahoo Group platform. Within three months more than 150 patients joined the group and within a year, the membership rose to 350.
Today, the PAN Support Network has more than 650 patients, caregivers, doctors, and researchers from all over the world. Over the last 15 years the PAN Support Network has become a partner with the Vasculitis Foundation. In addition, the organization has been recognized as a valuable resource to connect PAN patients with ongoing clinical studies through collaboration with the Vasculitis Clinical Registry Consortium.
Recently, a researcher at the National Institute of Health contacted Ed about a new genetic vasculitis study. The researcher said the challenge was finding eligible PAN participants who met the rigid parameters of the study. Thanks to the PSN, the NIH researcher was able to connect with members of the network that fit the narrow guidelines for eligbility.
“This is extremely gratifying,” says Ed. “The PSN is a true network where patients connect with one another. The group functions as a bridge between the patient and research worlds because they both need each other to enhance patient care and to conduct effective clinical trials. I like it when a good plan comes together!”
For more information about the PAN Support Network visit www.pansupportnetwork.org or contact Ed at [email protected]
J Pablo Abonia holds many respected titles from M.D. to Associate Professor of UC Department of Pediatrics. Dr. Abonia is an allergist-immunologist in Cincinnati, Ohio and is affiliated with the Cincinnati Children’s Hospital Medical Center. He received his medical degree from SUNY Buffalo School of Medicine and Biomedical Sciences and has been in practice for 17 years.
He is a well-published researcher, experienced allergist-immunologist, and educator. His research focuses on exploring research databanks (patient characteristics, tissue samples, RNA and DNA) to explain the mechanism, diagnosis and treatment of eosinophilic esophagitis. He is also the Interim Director of the Registry for Eosinophilic Disorders (REGID). View his PubMed Publications.
Dr. Abonia is also a patient with Polyarteritis Nodosa (PAN). His professional resume is exceptional and reflects his dedication and passion for improving knowledge, research, and outcomes for people living with eosinophilic esophagitis and other gastrointestinal disorders.
Dr. Abonia’s professional resume, though impressive, only illustrates a portion of the work he does to improve the lives of patients, including his own, as a patient with Polyarteritis Nodosa. Dr. Abonia was recently selected to be a patient-partner volunteer for the Vasculitis Patient-Powered Research Network (V-PPRN). The V-PPRN seeks to transform how clinical research in vasculitis is conducted by directly engaging patients, investigators, care providers, and health systems to develop research methods to electronically collect health records and patient-reported data on a large number of patients with various forms of vasculitis. The goal of the V-PPRN research program is to conduct high-quality studies that will improve the care and the health of patients with vasculitis by exploring research questions that matter most to patients and advance medical knowledge about vasculitis. As a patient-partner volunteer, Dr. Abonia will play a critical role in the development of the V-PPRN, utilizing his professional experience and personal passion for the lives of patients through knowledge and research.
Learn more about Dr. Abonia’s personal experience with PAN
The Vasculitis Foundation hosts international biennial and regional conferences for patients, their families, friends and medical professionals. The conferences feature recognized vasculitis experts presenting the most current information on diagnosis, treatment and research efforts.
The Vasculitis Foundation hosts international biennial and regional conferences for patients, their families, friends and medical professionals. The conferences feature recognized vasculitis experts presenting the most current information on diagnosis, treatment and research efforts.
July 12, 2014 the Vasculitis Foundation and the University Of Kansas Medical Center hosted the Kansas City Patient Vasculitis Symposium. This half day symposium featured experts from the University Of Kansas Medical Center including Dr. Jason Springer and Dr. Mehrdad Maz pictured above. The symposium was packed with educational presentations, round table discussions, and the opportunity to ask the professional team questions.
The presentations for the day included:
Covering a wide spectrum of vasculitis related topics, the symposium participants had the opportunity to learn and ask questions about a wide variety of topics important to their daily lives. Being that vasculitis is a rare disease, educational resources are limited for patients with vasculitis. The Vasculitis Foundation is dedicated to broadening educational opportunities for patients with vasculitis and ensuring that those opportunities are meaningful and engaging.
The goal of this symposium was to provide an educational opportunity, connecting patients, family members, and researchers. The VF knew that our goal had been met when we received this comment from a participant:
I don’t think that I can put into words the feelings that my husband and I came away with from Kansas. I will forever be thankful that I had that experience. I do so hope that you people will hold another symposium in the not too distant future. Now I know what is meant by genius. Those doctors are absolutely brilliant! They have such a great way of imparting their knowledge to the laymen. I told my husband on the way home,” I’ve met doctors, I’ve met good doctors. I’ve met doctors who tried to give me impression that they knew their field better than I, but before this time, I’d never met doctors who really, honestly knew everything about which what they were talking”
I thank you from the bottom of where ever.