The Nerdery - Overnight Website Challenge

Kansas City 2014, April 12-13

Vasculitis Foundation

Based in the United States, the Vasculitis Foundation is the only international organization for patients with vasculitis. The VF empowers patients through disease education, raises awareness of vasculitis in the general public and medical community, and funds research to determine the cause, develop more effective treatments, and discover a cure. The Vasculitis Foundation is committed to improving the lives of current and future patients and is positioned as the definitive resource for patients, family members, medical professionals and researchers seeking information about vasculitis.



The Vasculitis Foundation organizes and funds regional and international symposia where patients connect with other patients and learn about the latest therapies and treatments. It also promotes and supports the activities of chapters and support groups worldwide. Similarly, the Foundation keeps patients up to date on the latest research and medical news through its website, newsletter, and through social media. These activities help alleviate the isolation that patients and their families experience when these life-threatening diseases affect them.



To help raise awareness of vasculitis in the worldwide medical community, the Foundation partners with recognized vasculitis authorities and experienced clinicians and researchers representing many of the world’s finest medical institutions. These consultants work with the Vasculitis Foundation on opportunities to teach and present information about vasculitis at national and international medical conferences.



The Vasculitis Foundation provides educational materials, raises awareness and understanding of vasculitis in the general public and medical community. During Vasculitis Awareness Month in May of each year, advocates from across the world work together putting a face to the disease. Activities held throughout the month include: walks, picnics, fundraising events, educational meetings, advocating with local government officials, and simply passing out brochures and information about vasculitis.



Research funding is a priority for the Vasculitis Foundation. In fact, the Vasculitis Foundation Research Program, established in 2001, is the largest private funder of vasculitis. The Vasculitis Foundation collaborates with researchers around the world to fund the most promising studies. Recent medical advances have turned many types of vasculitis from universally fatal diseases into chronic diseases.

The Vasculitis Foundation Fellowship provides the opportunity for one- or two- year tracks designed to support the training of physician scientists who wish to gain clinical expertise in vasculitis and who may also wish to pursue an investigational career in this field. The fellowship will be conducted through Vasculitis Centers where there has been a track record of training individuals in vasculitis.

What new functionality we are looking for

The Vasculitis Foundation website would like to adopt contemporary strategies to incorporate Internet tools, such as electronic communication, blogs, lists, calendars, social media, etc. to encourage people to join and participate in VF activities and to financially support the organization.



One of our critical needs is to have a more efficient and elegant mobile presence. We must present our complex educational information in a format for people who are only accessing our website via a small mobile device such as a cell phone or iPad (as opposed to a laptop or desktop computer).



The website needs to better integrate our WordPress website with our Salesforce CRM much more effectively. VF supporters host multiple awareness and fundraising events worldwide (everything from bowling rallies to golf tournaments) and we need to be able to manage our event management and event registration. We want to use the system to provide user registration and contact management, and payment collection through the website.



With a more interactive website, we could connect patients worldwide with our physicians and researchers to advance better treatment and more extensive research.

How the new functionality will help

In addition to changes stated above, a new website would help us further our mission by connecting patients with researchers. This would encourage patients to participate in research. Effective research requires large patient cohorts to gather enough data to make definitive conclusions. Our patient population is very small (less than 200,000 in the United States) and they live all over the world; we need to more efficiently connect with patients to draw them into research efforts. We cannot answer the questions about what causes vasculitis, how to better treat it, how to cure it, without the patients' participation in research.



As the definitive resource for vasculitis patients around the world, the VF website is our voice and the strongest resource available to patients living with this rare disease.

How our organization will use the technology

Who will use the technology

25 Messages from Supporters

2014-03-12 03:14:46 UTC
Pamela Carlson

I have been helped by the Vasculitis Foundation's web site. It answers my questions about the symptoms of the disease and about the treatment. If you post a question, it is answered soon after posting. This website makes me feel like I am not alone in this disease. This website gives me hope that I can not only survive with vasculities but also thrive!

2014-03-12 13:43:21 UTC
George Casey

The Vasculitis Foundation has provided me the opportunity to connect with World Class physicians and researchers, dedicated caregivers, and patients just like me. Prior to engaging with the VF, I was in the dark about the latest, cutting edge treatment options. Through this exposure, I've been able to modify my treatment in such a way that I have a measurably better quality of life. It's been a privilege to raise both money and awareness for this outstanding organization.

2014-03-12 13:44:32 UTC
Danielle Miller

Our 13 year old daughter was diagnosed with MPA/GPA last year and I was so lost and scared. I found the Vasculitis Foundations website. I was able to learn more about the disease and through the site I was able to be linked to other families with this disease. Unlike other life threatening diseases like cancer, this disease is very rare so hospitals do not have support groups or informational seminars about this disease, so the vasculitis foundation is our best link to information, doctors, up to date news and trials, and support groups. I know the foundations wants to do more and in today's world more can be done with the foundations website to reach more people and spread information. I really hope the foundation will be picked so it can get the word and information out there about this disease.

2014-03-12 14:41:59 UTC
Grace Eisen

The Vasculitis Foundation website and organizational resources provided me with both the knowledge and support I needed to survive, live and thrive with my vasculitic disease. As a member of the Vasculitis Foundation board of directors I believe improving the understanding of those whose lives have been impacted by vasculitis of their disease process, best practices in disease management and prevention of complications through the knowledge, resources,and support the Vasculitis Foundation website offers will promote improved quality of life for those living with vasculitis.

2014-03-12 14:42:01 UTC
Christine Cox Marinelli MD

I became aware of the Vasculitis Foundation (VF) when diagnosed with the vasculitis in 2001. I was not responding to treatment, and although I was a physician, knew little about this autoimmune disease. The VF website gave me a wealth of information, including notices of teaching seminars and support groups in my area. It helped keep me abreast of current research in the field as well. Now, as part of the VF Board of Directors and Chair of the Research Committee, I help choose our next funded research project. This is exciting since we have applications from the world-wide body of vasculitis experts. It also allows me to give back to the VF and to help patients who are struggling with their chronic and often debilitating illness.
The website has been invaluable to accomplish international communications and to provide information to patients 24 hours a day.

2014-03-12 14:45:29 UTC
Brandi Whitaker

In 2001, my Mother was diagnosed with GPA (Wegener's) when I was 11 years old. No one (hardly even the doctors) had heard of her disease and we felt alone and scared when they told us that she probably wouldn't make it through. When she got out of the hospital (thankfully overriding the terminally bleak diagnosis the doctors had given her) she looked around on the internet to find other people who were going through the same experiences as her, and she found the Vasculitis Foundation! They knew what her disease was, and knew people who had been through her pains and struggles. She received information packets and an entire community of support and interest in her well-being. She enjoyed being an advocate until 2008 when the disease took her life. I still visit the Vasculitis Foundation today because they are truly the only website I visit that knows what killed my mother, and they want other people to know about it, too. Rare diseases go overlooked far too often, but the Vasculitis Foundation wants to put a stop to that. I plan on being an advocate in my area once I complete graduate school, and help support and be with people who are going through what my Mom went through. Hopefully with enough awareness, research, and support through this website and foundation, we can one day find a cure for the diseases that have taken so many of our loved ones. The Vasculitis Foundation deserves all of the help it can get to improve awareness!

2014-03-12 14:46:33 UTC
Kathy Olevsky

Vasculitis is a lonely disease. Those of us who have it need the contact with others that we get through this website. We can hear similar stories and find resources to help us live within this disease. I was a very healthy athlete before being diagnosed. The Vasculitis website helped me to navigate the first few years of my disease. However, this website could be stronger. It could serve more and it could educate more. The information available on the many forms of Vasculitis is just not currently available in a user friendly platform. I am living a fairly normal life 6 years after diagnosis, but when I was found out I had Vasculitis I would not have thought it possible. We need more education and more support to our community and that of our families.

2014-03-12 15:19:05 UTC
Christine David

I'm 29 years old, & was first diagnosed with the rare Vasculitis- Wegener's in 2012.
I had common symptoms: Wheezing I, & my doctor thought was just an asthma attack. Allergies we thought it was just every day common allergic reactions. Loss of weight well I was dieting, eating right, & exercising so the tons of weight I lost, I thought I was just doing a great job. The loss of hearing in my ears, the ringing I thought it was early signs of an ear infection. The blurry-double vision I assumed it was from late night reading. The coughing up blood, & random nosebleeds I thought "wait something's seriously wrong" but I just assumed it was a bad case of an asthma attack. Because I was wheezing, & it felt like I was breathing through a straw. My husband rushed me to the ER, I was in quarantine (pretty much). They weren't sure if it was TB, or the Swine Flu (because the Swine Flu was at its peak at the time). The doctors ran all kinds of tests, & nothing came back. Except in my chest X-rays. There was a golf ball sized black mass on my lungs. The doctors just concluded it being a very severe case of pneumonia. So that's what I got treated for, & I got better. But the doctors wanted more chest X-rays after I left. I went for the X-rays, & the black mass was gone. Why? Because it traveled to my kidneys.
3 years later I find myself with a metallic taste in my mouth. Constantly going to the bathroom to urinate, my ankles will swell up, my joints would ache, my senses to smell/taste have completely disappeared, & I start to feel this random warm liquid sensation go down my kidneys. My kidneys were failing, & I had no real inclination as to why. The very last thing I was thinking was a rare disease.
I went to the ER, December 27th 2012 for what I suspected was a stomach bug my husband, and kids had before I did. & although they were miserable, it felt like I was dying. It wasn't the same or what I had was something different, & worse. I'm sitting there, & the doctor informs me my kidneys are spilling blood into my urine, a sign of kidney failure. From there comes the testing, biopsy & diagnoses. Vasculitis what? Wegener's what? No ones heard of it. :(

2014-03-12 15:26:23 UTC
Anonymous

(Continued)
After recieving my first round of treatments. Of course I had a second doctors opinion I wasn't ready, I was scared, & felt in the dark to have this. This being something I've never heard of, & didn't understand how, or why I got it. So besides asking my Dr about it, I took to the internet to do some reserch. I found this site, & was relieved to find others in my situation, other stories, & information.
The site is doing a great job.
Knowledge is key to help people who are faced with this. Support is also huge.
Now it's time for further testing, spreding awareness, in hopes for a cure one day.

2014-03-12 16:01:03 UTC
Susan Kellogg

The Vasculitis staff does wonderful work for its members on a shoestring. They are a small, stable group who are sincerely dedicated to those of us who have Vasculitis. Through their Vasculitis Foundation website, we are able to learn about the latest studies and new information about out illnesses and importantly, support each other. There is a serious emotional component to a chronic illness. Beyond the devastating effects of the disease, financial difficulties, isolation and despair are made more bearable by having a community. Almost without exception patients go through a long and harrowing process of diagnosis due to poor awareness in the medical community. Almost all of us have been misdiagnosed for months. Those who survive that process and get diagnosed are already months behind in their recovery. Increasing Public awareness is a huge part of the problem and the Vasculitis Foundation has focused on that for years. They are in position to use your award wisely.

2014-03-12 18:27:56 UTC
Erika

I am currently working with the VF to plan a Rally in the Alley event (a bowling fundraiser). A form of the disease takes it toll on my dance teacher who is the original reason that I began to look into things I could do to support her as well as the foundation. Vasculitis is not cancer. It is not well known and there is no "cure" which, to me, is much scarier. Awareness of this foundation and disease is vital because of the amazing potential that the foundation has to help its patients. They work closely with those of have the disease and I have had the opportunity to begin to explore how much the foundation already does to raise awareness and funds. Rally in the Alley events will be held all throughout the month of May and with the new website design, hundreds of families would be able to educate themselves in a more efficient and interactive way that would benefit themselves and the foundation. The Vasculitis Foundation deserves recognition and truly deserves a chance to update their accessibility to all patients and participants in fundraisers who need it. (I want to thank the foundation for all they have done for my teacher, without them I would not have her. My entire future has been created based on what she has taught me and her future depends on everything this foundation does, so thank you).

2014-03-12 20:57:48 UTC
Tamara Wagner

When I was first diagnosed with a rare auto-immune vasculitis called Microscopic Polyangiitis, I was terrified. I couldn't find any information,and I felt alone. If it wasn't for the Vasculitis foundation, I never would have been able to get better. It's resources are amazing, and they have put me in touch with some great people. I feel less alone. The Vasculitis Foundation could help so many more people if they were able to incorporate the social connection aspects to it. I would recommend the foundation to anyone.

2014-03-12 23:15:03 UTC
Jaime Szymanski

My dad was diagnosed with Vasculitis a little over 2 years ago. He was put on emergency dialysis. I never heard of this disease before and luckily became very educated through the Vasculitis organization. My dad is now in remission and doing wonderful. I was very scared and sad throughout it.

I am an assistant principal at a school in an elementary school in NYC. the teachers in my school volunteer their team for a runners club for 3-5th graders. We teach the kids not only about nutrition and fitness but also about giving back. Each year the culminating event requires the students to raise money for an organization. Last year the dedicated it to my dad and we raised several thousand dollars for the Vasculitis foundation. It was amazing. My goal was and is to spread awareness of this disease. It is an amazing organization that helps in so many ways.

Speaking to people from the organization helped keep me positive by hearing so many success stories. They helped me stay positive. They are wonderful.

2014-03-13 05:27:15 UTC
Helena Borges Cunha

I'm from Brazil and after a long run I was diagnosed having PAN. Quite scary for me due to the lack of information about vasculitis. The doctor told me it was an autoimmune disease and that was it! Through the Vasculitis Foundation and its website I could understand PAN and could feel much better about it. VF Website goes far beyond because it's not only knowledge we get besides it we get comfort. Blessed VF and its website!

2014-03-13 01:35:25 UTC
Patti Kemp

When I was first diagnosed with GPA/Wegener's, I was told that only old men who smoked got the disease; I was a non-smoking woman in my early 20s. I am from Canada, and the Vasculitis Foundation connected me both with people in my own area and to the larger community of members. They provided me with information about the disease that I could never have found otherwise, and after that first connection, I no longer felt so alone. As a member for more than 15 years, I have watched the VF work tirelessly to provide up-to-date information, cutting edge research and valuable support to patients around the world. Since diagnosis, I have backpacked around the world, lived overseas for 10 years and had treatment in both Australia and the UK and through it all, the VF has been there, providing information to members and physicians around the world. The VF has given me the knowledge and courage to live a full, productive life. As a Board Member and Co-Chair of the Support & Education Committee, I know that this Website Challenge would provide us with enormous help to empower our community and reach out to more and more individuals affected by vasculitic diseases.

2014-03-13 07:48:16 UTC
Steve Madincea (Vasculitis Board member since 2004)

The Vasculitis Foundation change my mind set from being newly diagnosed and extremely concerned because I had a very rare disease to comfort as I learned more about what the medical community was doing to combat these awful diseases to one of joy as I met hundreds of patients at symposiums around the world who have given me hope, encouragement and a knowing smile to let me know I will be all right. Now we must have a similar journey and outlook for all of our current and future patients around the world. By connecting via social and digital channels more effectively we can give all patients the same positive outlook the VF provided to me when I needed it the most.

2014-03-13 17:42:49 UTC
Bob Sahs

The VF was founded in 1986 by Patients for Patients; and what was started by one patient in a kitchen has since transformed into an organization who has helped thousands of patients, family members and caregivers worldwide. And, my wife Elaine (patient) and I are fortunate to have been beneficiaries of the hard work of our early pioneers. It is because of the hard work of our predecessors that Elaine & I have pledged our retirement years to continue that work.
In doing so, I have had the privilege of serving on the VF board of directors since 2006. In that time, my colleagues on the board have made great strides in supporting our mission, which is to support and empower our community through education, awareness and research. However, the one thing I have found lacking over the years that would aid us in our mission is a truly effective website; and I hoping that the Nerds that be at the "Nerdery" will come to our aid.

2014-03-13 23:40:34 UTC
Jess Foster

The VF means so much to me and so many of my friends and family members. We were blindsided when my best friend was diagnosed with GPA/Wegeners in 2009. We were frantic to find out all we could about the disease and what we could do to help. That's when we first found the Vasculitis Foundation. The website offered a wealth of information and for us, comfort. Unfortunately, our friend, Danielle, didn't beat this terrible disease but we found support through the VF and each other. Having a virtual space to see other's testimonials, find information, and see how others were supporting vasculitis patients gave us comfort and the courage to plan our own event. Not only will this event help raise awareness of vasculitis disease and raise money for the research of these diseases but it also brings healing. The support we've seen working with the VF and through the local chapter groups has been inspiring. Just the outreach and outpouring of community support has done more for my personal journey of "my new normal" than any amount of time could do and all because we visited this website 5 years ago. It would be truly amazing and a worthy cause to see someone give this website the capabilities to do more than it does - building a bigger, more social community so that it becomes easier to outreach and spread awareness of these rare disease. Rare doesn't have to mean unknown.

2014-03-14 15:16:30 UTC
Teresa Linn-Gregory

I was diagnosed in 2012 with Granulomatosis with Polyangiitis which I'd never heard of even though I had been a critical care RN for more than 34 years. My sister Trina { also an RN who is still working } found several websites online at her hospital; one of the papers she printed off for me contained the contact information for the Vasculitis Foundation at the bottom. Thank goodness I had this info because my Rheumatologist didn't have a clue how to treat me. I called the phone number and Joyce A. Kullman answered the phone. Within 10 days I had a package containing 2 past newsletters and other info. I read every bit of it and carried all of it to each of my physicians demanding they keep a copy of the page containing the Vasculitits Foundation Medical Consultants on my chart incase they might need some guidance for my care. Because of the paperwork
Ms. Kullman sent me I knew of the current treatment for my Wegener's Disease as being Rituxan IV; the Rheumatologist argued with me that I was mistaken....it wasn't used for that. Having no confidence in her ability to treat me effectively after that exchange, my personal physician switched my care to the University of Michigan who immediately started me on Rituxan IV infusions. Now the problem I'm having is finding unglorified information regarding signs & symptoms of a flare up and/or end-stage Wegener's Dx symptoms so I can keep ahead of this. I think this site would help greatly for newly diagnosed vasculitits patients so they're getting timely info straight from other affected persons. Thank You for all you do...TG

2014-03-15 17:17:55 UTC
Jason Wadler

The Vasculitis Foundation has provided an immeasurable level of support for me as a vasculitis patient, and I have seen firsthand the tremendous support they provide the entire vasculitis community. They actively work with the medical community to fund research and fellowships that will provide better patient care and accelerate a cure for the disease. As a board member, I'm impressed that every conversation is patient-centered and highly sensitive to the needs of the community. I'm very proud to be part of the foundation and look forward to having a website that represents and supports the community at the next level.

2014-03-17 00:38:17 UTC
Anonymous

I cried when I started doing online research after my child's diagnosis. So much of the information I was reading from my phone in the ER was horrible and I came to find out, outdated. When I found the VF website, I found current sources and hopeful information. I was able to find out who where the experts were in the field. I got an appointment with one of them within days. I found out what the standard treatments were, and came prepared to that appointment to ask the best questions. I found phone numbers of board members who were willing to talk to me about the treatment course and about my feelings. The VF is such a fantastic organization with helpful members and a website that contained accurate and current information. Thanks VF!!

2014-03-17 00:45:43 UTC
April

I was diagnosed with Churg Strauss Syndrome in 2005 after 2 years of being sick. After years of medication I eventually went into remission and enjoyed a "normal" life. Unfortunately, I recently had a flare and was quickly reminded of how alone you could feel having vasculitis. That alone feeling was short lived after finding the support and resources of the Vasculitis Foundation. It is amazing how much easier it is dealing with the flare this time because I do not feel alone. I did a lot of my initial searches for support through my mobile phone and had issues with the site so it would be great if that could be resolved.

2014-03-19 16:48:34 UTC
Ed Becker

As the director of a vasculitis patient organization I depend on solid, reliable information about the disease. I've found the Vasculitis Foundation website to be my #1 Go To source to get this information..so that I can confidently share it with the members in my organization. When a newly diagnosed patient joins my group I immediately send them to the VF's website because everything they need to know is in one central location.
The website is easy to navigate, comprehensive, and offers the vasculitis patient a one-stop place to begin their education about this disease.

Keep up the good work and the GREAT website.
ED

2014-03-24 06:31:42 UTC
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2014-03-24 19:42:14 UTC
Anonymous

Overall the Vasculitis Foundation has helped me. The only exception is their facebook group. Leslie Scott Lyson, the administrator of the group does not seem to want to help everyone. She removes people if they say something she does not agree with and also people with more knowledge than her. The VF refuses to acknowledge this problem. I wish the VF much success and hope that this problem is resolved.

Our Mission

The Vasculitis Foundation supports and empowers the vasculitis community through education, awareness, and research.