The Accessing Social Support in Symptom Treatment (ASSIST) Study

From: Delesha Miller Carpenter dlmiCLICKHERE@email.unc.edu
Date: Mon, Sep 22, 2008 at 1:55 PM
Subject: New Mexico support group
To: Karla, Joseph

Hello,

I am writing to you because you are listed as a contact for your area in the Vasculitis Foundation newsletter. I wanted to let you know that there is a new research study at the University of North Carolina Kidney Center, the ASSIST Study, that might be of interest to vasculitis patients in your area.

The Accessing Social Support in Symptom Treatment (ASSIST) Study is recruiting persons living with vasculitis to understand how support from different people (spouse/partner, family member, friend, doctor) affects one’s ability to cope and effectively manage vasculitis. This is one of the first studies to investigate the effects of different supportive relationships for vasculitis patients.

To be eligible for the study, patients must have a diagnosis of vasculitis, currently be taking at least one medication to treat vasculitis, be older than 18 years of age, and have access to a computer with internet access. Participants will be asked to complete two confidential online surveys. The first survey should take no longer than 1 hour to complete, while the second survey takes approximately 30 minutes to complete. The surveys ask about how different relationships affect how patients cope with and manage treatment for vasculitis, including medication side effects.

Participants will receive a $10 gift card after completing the second survey.

If you think patients in your area may be interested in this study, please feel free to forward this email and my contact information to them. I can also mail study brochures to you if you would like to distribute them at an event or support group meeting.

Currently, 130 people have taken the survey and I am hoping to recruit 170 more people, so there is lots of room for enrollment!

If you have any questions, please email Delesha Carpenter, MSPH, at dlmiCLICKHERE@email.unc.edu. I can also be reached at 919-966-2561 ext. 302 or toll-free at: 1-866-462-9371.

Thanks so much,

Delesha Carpenter


Project Director
ASSIST and PAIRS Study
3300 Thurston Bowles CB#7280
University of North Carolina
Chapel Hill, NC 27599
Phone: 919-843-9256

Pianist Andrea Pittini to Donate Download Earnings to the VF!

Pianist Andrea Pittini will donate 100% of earning on her new albums, Spaces, available on iTunes, Napster, and Amazon. Buy the album during the month of September, and your download fees will be donated to the Vasculitis Foundation.

VF Webinar was troubled, but worthwhile

The first ever webinar with three of the foremost experts on vasculitis was held today.

The talks by Dr. Peter Merkel, and Dr. Carol Langford were abbreviated due to technical difficulties. The talk by Dr. Ulrich Specks was complete and was excellent. The Q&A session was preempted because of time constraints resulting from earlier technical issues.

Sure, there were some technical difficulties, but it is important to keep the eye on the prize. Next time it will be better.

In a few days, those who registered for this webinar will get an Email with links to either a live rebroadcast of the webinar, or a downloadable link of the full presentation.

Stay tuned and be patient folks. This was a first, and when using technology, the first time is usually a bumpy ride. The organizers will iron out the kinks and next time will be better.

Now, on to other things...

: Joseph Carpenter
Albuquerque, NM
CSS Parent, Daughter DX March '08
Celebrating six months without symptoms!
Central NM Chapter - Vasculitis Foundation
http://www.nmvasculitis.org

Reminder: Vasculitis Webinar TODAY! at 10:30AM for New Mexico listeners

SPECIAL ANNOUNCEMENT Join us for a Webinar on September 22 Subject: Vasculitis Defined Date: Monday, September 22 2008 Time: 10:30 AM (America/Denver, -0600 GMT) Reserve your Webinar seat now at: https://www1.gotomeeting.com/register/355089098 The Vasculitis Foundation (VF) invites you to participate in the first-ever webinar on vasculitis. The 60-minute webinar will define vasculitis and discuss best treatment practices. There is no fee for this webinar. Vasculitis is a family of diseases, including Behcet's, Buerger's, Central nervous system, Churg Strauss, Cryoglobulinemia, Giant cell arteritis, Henoch-Schonlein purpura, Hypersensitivity vasculitis, Kawasaki, Microscopic polyangiitis, Polyarteritis nodosa, Polymyalgia rheumatica, Rheumatoid vasculitis, Takayasu's and Wegener's. The Vasculitis Foundation (VF) is the only international organization for patients with Vasculitis. Founded in 1986, VF provides patients and family members with practical information and coping strategies to live successfully with Vasculitis. The presenters for the webinar are: Dr. Carol Langford is the Director of the Cleveland Clinic Center for Vasculitis Care and Research. Dr. Peter Merkel is the Director of the Boston University Vasculitis Center. Dr. Ulrich Specks is with the Division of Pulmonary and Critical Care Medicine at the Mayo Clinic. The Vasculitis Foundation educates patients, family and friends of patients, the medical community and the public through its website, bimonthly newsletter, information packets, 800-number and patient support staff, and symposia. This will run in your web browser. Adobe Flash Player required. System Requirements PC-based attendees Required: Windows® 2000, XP Home, XP Pro, 2003 Server, Vista Macintosh®-based attendees Required: Mac OS® X 10.3.9 (Panther®) or newer Reserve your Webinar seat now at: https://www1.gotomeeting.com/register/355089098 Once you register, you can also use a telephone to call in. If your computer does not have a microphone that is an option. You will need to use the Access Code and Audio PIN for your specific registration, then call one of the numbers listed below. If you do not have an access code then you need to register first. Subject: Vasculitis Defined Date: Monday, September 22 2008 Time: 10:30 AM (America/Denver, -0600 GMT) Conference Call: Audio: Use your microphone and speakers (VoIP) or call in using your telephone. United States: (702) 824-9512 Access Code: xxxx-xxxx-xxxx AudioPIN: xxxxx Australia: +61290370214 Austria: +43720880313 Belgium: +3228081214 France: +33426460175 Germany: 4989549986652 Ireland: +35315262941 Italy: +390289038656 Netherlands: +31708912549 New Zealand: +6499250408 Spain: +34911875535 Switzerland: +41435005946 United Kingdom: +442030514836

Resource for caregivers

While the Vasculitis Foundation is all about providing resources to patients, we also want to care for the caregivers. For many patients, their daily struggle is aided by a loved one, or a caring friend who helps them in so many ways. I was introduced to a resource today for caregivers that shows some promise. They have a separate listserv for caregivers, and it is a place to get advice and support from others who will understand the unique role caregivers play in the lives of those with chronic, disabling health conditions.

: Joseph


Family Caregiver Alliance (FCA): FCA is a public voice for caregivers, illuminating the daily challenges they face, offering them the assistance they so desperately need and deserve, and championing their cause through education, services, research and advocacy.

More than 25 years ago, a small task force of families and community leaders in San Francisco came together to create support services for those struggling to provide long term care for a loved one who did not "fit" into traditional health systems: adults with Alzheimer's disease, stroke, Parkinson's, traumatic brain injuries and other debilitating disorders. The diagnoses were different, but the families shared common challenges: isolation, lack of information, few community resources, and drastic changes in family roles.

http://www.caregiver.org/caregiver/jsp/home.jsp

Events at the NM Biopark Society

There are a number of events coming up at the NM Biopark Society.

In relation to NMVasculitis, I see potential here for socializing with our chapter members, and also a few opportunities for awareness events. Especially the Run for the Zoo. I think we can get patients, and/or their friends and family members, to carry a banner in the walk and figure out some way to get co-sponsorships for both our organization and the zoo. I know someone in the marketing department at the zoo, and will make some calls on this to see if there is a chance to make something happen. At least if they will let us carry the banner during the walk. That would gain us some eyeball awareness and maybe also some press coverage as well.

The events list includes all three venues:
> Rio Grande Zoo
> Albuquerque Aquarium
> Rio Grande Botanical Park

20th Annual ZooBoo
October 25 & 26 2008

River of Lights at the Botanic Garden
November 24 - December 30, 2008
(Not open December 24&25)

Earth Day - Party for the Planet
April 22, 2009

24th Annual Run for the Zoo
May 3, 2009

Mother’s Day Symphony Concert at the Zoo
May 10, 2009

ZooMusic 2009 Concert Series
Friday Nights in the Zoo

Summer Nights 2009 Concert Series
Thursday nights in the Garden

Vasculitis on 770KOB!

Hey!!!! I will be a call-in guest on the Jim Villanucci show this Friday, September 19. I will be calling in about 6:05 pm, and we will be discussing Vasculitis and getting awareness out there. Jim has a lot of listeners so hopefully we'll reach a few people.

What a great way to kick off awareness week! Thanks so much to Carlene Hobbs for setting this up.

Say a prayer, I'm nervous!!!

Karla K

2008 Vasculitis Symposium DVD's

2008 Vasculitis Symposium DVD's

If you missed the 2008 VF Symposium at the Mayo Clinic, now is your chance to hear the important lectures the attendees did. If you did attend, you may still want a set for your library.

They are an important resource for the latest news from the vasculitis research community.

*$60.00 (includes packaging/shipping.) from the Vasculitis Foundation Store.

Price: $60.00

add to cart

Awareness: Highlighted Member articles

Each vasculitis patient has a story.

They are encouraged to share them with each other, and also with the Vasculitis Foundation.

I have noticed that many times vasculitis is such a monumental event in a persons life that the local media takes notice and will publish special interest articles about a patients story.

If you would like to share your story, please do. If you would be willing to be interviewed by local media to have your story published in the New Mexico newspapers, magazines, as well as on radio and maybe television, then your story can help spread awareness about vasculitis.

People will say, “I saw that on the news,“ or ”I read about that in a magazine once.“

We WANT people to talk about vasculitis, so that they will know what to expect if they or their loved one end up with it. We also want them to know about it so they can decide if they would like to help fund new vasculitis research.

On a totally voluntary basis, chapter members are encouraged to share their story and to consider sitting for an interview to help spread the word. The way I look at it, the more people who know, the closer we get to better treatments or a cure.

: Joseph

Fundraising and Awareness: Cobranding silicone wristbands

I work with kids a lot, so the wrist bands are a favorite with them. I also realize that the profit margin on silicone wrist bands is pretty high, so all that money goes to vasculitis research. In my opinion, all VF members should have an information card and a handful of give away items with them at all times.

Buy them in advance and sell them to your friends! Tell them they can have a cool wrist band, but you need a donation.

I was going through my drawers last night and came across a silicone wrist band for Breast Cancer Awareness.

What was unique about this was the logo for Walgreen’s pharmacy. I recalled then that I had purchased this wrist band at Walgreen’s for the listed price of $2.00.

Now, this makes me wonder... why not do this sort of B2B partnership with more stores for the Vasculitis Foundation?

Any big retailer would be a likely candidate, though after a little brainstorming I really favor Target. Both because it is a brand name I trust and because their logo is also a red circle, representing a target. Just as the Vasculitis Foundation logo is three red circles representing small medium and large blood vessels. We want to target a cure for vasculitis! Could you find a more obvious partner?

Now, how do we go about meeting the decision makers at Target Corporation? Somebody should put Bob Haas on this project. Just selling wrist band as end caps at the Target check out counters would likely make thousands of dollars every year just in impulse buys, without even needing to organize an event. Depending on the profit, maybe kick back a nickel to Target to pay for the shelf space... and BAM! you got a money maker.

Next, you organize a nationwide event in conjunction with Target, at all locations that have a local VF chapter, then you get even more opportunities to raise awareness and make money. Combine that with a nice raffle, and you get some pretty great word of mouth.

Any way you slice it, the idea is to get the contact information to the public to increase awareness, and give them a chance to donate at the same time.

What about offering multipack silicone wrist band in partnership with other organizations? No discount, just offer it as another item. For $2.00, you get our organization, and for $8, you can get Vasculitis Foundation, Red Cross, American Heart Association, and United Way... or something like that. All the better if the multi pack is also multi colored.

Each chapter can set up a partnership with a print on demand outfit like Cafe Press, to have the organization logo printed on any number of items. That is another idea that I will discuss in a moment.

Join us for a Vasculitis Webinar on September 22

Vasculitis Defined

Monday, September 22, 2008
12:30 PM - 1:30 PM EDT

Join us for a Webinar on September 22
The Vasculitis Foundation (VF) invites you to participate in the first-ever webinar on vasculitis. The 60-minute webinar will define vasculitis and discuss best treatment practices. There is no fee for this webinar.

Vasculitis is a family of diseases, including Behcet’s, Buerger’s, Central nervous system, Churg Strauss, Cryoglobulinemia, Giant cell arteritis, Henoch-Schonlein purpura, Hypersensitivity vasculitis, Kawasaki, Microscopic polyangiitis, Polyarteritis nodosa, Polymyalgia rheumatica, Rheumatoid vasculitis, Takayasu’s and Wegener’s.

The Vasculitis Foundation (VF) is the only international organization for patients with Vasculitis. Founded in 1986, VF provides patients and family members with practical information and coping strategies to live successfully with Vasculitis.

The presenters for the webinar are:

Dr. Carol Langford is the Director of the Cleveland Clinic Center for Vasculitis Care and Research.

Dr. Peter Merkel is the Director of the Boston University Vasculitis Center.

Dr. Ulrich Specks is with the Division of Pulmonary and Critical Care Medicine at the Mayo Clinic.

The Vasculitis Foundation educates patients, family and friends of patients, the medical community and the public through its website, bimonthly newsletter, information packets, 800-number and patient support staff, and symposia.

System Requirements
PC-based attendees
Required: Windows® 2000, XP Home, XP Pro, 2003 Server, Vista

Macintosh®-based attendees
Required: Mac OS® X 10.3.9 (Panther®) or newer

Reserve your Webinar seat now at:
https://www1.gotomeeting.com/register/355089098

99% of fund raising goes to research

Do you wonder where the money goes when you join the Vasculitis Foundation, or when you donate money at a fundraiser?

99% of the money raised by the VF goes to fund seed grants to support vasculitis research.

Here is a list of some of those projects:


VF Funded Research | Vasculitis Foundation
http://www.vasculitisfoundation.org/vasculitisfundedresearch

This list downloaded on 9/7/2008

"VF Funded Research

The VF recognizes the importance of encouraging and supporting research to gain a better understanding and knowledge of vasculitis.

The VF Research Grant Program was established in 2001 and provides one and two year grants to support pilot studies investigating the causes of vasculitis, developing more effective treatments and improving diagnostic tools.

Following are some of the studies funded by the VF.

* Short-term cyclophosphamide therapy in a cohort of over 200 Patients
* Host-microbial interactions in Wegener’s Granulomatosis: The role of ANCA and S. aureus persistence
* The role of shear stress in neutrophil proteinase-3 expression and its importance in vascular injury sites in WG
* Analysis of NKG2D expression on CD28
* Identification of Novel Wegener’s Granulomatosis Susceptibility Genes
* Environmental Factors in the Pathogenesis of Wegener’s Granulomatosis
* Localized Wegener’s Granulomatosis: Epidemiological, clinical and histopathological characteristics
* Wegener’s Granulomatosis and Microscopic Polyarteritis Case Control Study in Western Montana
* Development of a Measure to Assess Patients’ Adherence to Vasculitis Treatment Regimens
* A Pilot Project towards Establishment of a US/Canadian Diagnostic Registry of Children with WG and Related Vasculitides
* Renal transplantation in WG: mortality, allograft outcomes, and incidence of malignancies from the United States
* Identification and characterization of immunodominant, conformational epitopes of anti-neutrophil cytoplasmic antibodies
* Gene Expression Profile of Temporal Arteritis in Giant Cell Arteritis"

Medline Plus Patient Education Tutorials: Vasculitis

The National Institutes of Health has put together a flash tutorial that will help you understand the basics about the medical condition known as vasculitis. It discusses the anatomy, symptoms, causes, diagnosis, and treatment of vasculitis.
www.nlm.nih.gov/medlineplus/tutorials/vasculitis/htm/index.htm

There are 50 slides and the tutorial takes about 10 minutes if you run the self-playing tutorial without questions. You can go a little faster if you run the presentation manually, but you might miss something.

This is an overview. For a more specific understanding about specific types of vasculitis and their unique symptoms and treatments, please visit the list of vasculitis diseases at the Vasculitis Foundation website.

Inspirational Churg Strauss success story and video

Hello happy campers. Tummy troubles are keeping my baby girl home today, so I took some time to cruise for vasculitis information this morning. I ran into this little video about Irina Slutskaya, the Russian figure skater. Diagnosed with vasculitis in 2003, then one year later she returns to not only live her life, but also compete for gold medals, and win them. Wow.

Irina once met with CSSA founder Jane Dion to share her success story. (If I can find that article, I will post a link here.)

The person who posted the video below said this: "I used the promotional album of Anastasia by David Newman, an animated film made by FOX (not Disney) in 1997.
Irina's story is a story of resurrection, just like Anastasia's. Diagnosed with vasculitis in 2003, many thought she'd never skate again. Prayers went out that she might one day live a normal life, let alone skate. She proved them wrong by coming back in 2004 and was undefeated in 2004-05 season, and earned her second world championship. Truly an inspiration."

Health.com: Pain Patients Shouldn't "Tough It Out"

Event idea: Baseball tournament

My sister, Kathleen, is an awesome chica. She used to manage the premier sports baseball, softball, and sand volleyball complex in Albuquerque. It was known as the Sportsplex.

She is also active with little league, All-Stars, and some other alphabet soup baseball related organizations. Point is she is connected to youth and recreational league baseball in Albuquerque.

So, I asked her, "Hey, how hard would it be to organize a baseball tournament?"

Yeah... I kind of set loose an irresistable force... She set about making a few phone calls to the right people and now it looks like we may have the beginnings of a fundraiser tournament for next year... At least the pot is boiling and we have some rocks. Next we need carrots... then celery... how do YOU make Stone Soup? :o)

"On Tue, Sep 2, 2008 at 4:04 PM, Kathleen wrote:







I have already talked to a few people and they are very excited about
the idea of an amature, just for fun and fund raising baseball
tournament. Dana will help us when ever we are ready but I can say
from experience, things like this work best when planned well in
advance. Not only do we need to secure the field space but also I need
to talk to people and get donations for awards and general operating
costs to deflect from the profits. I too want to keep things simple but
there are a few logistics to maneuver for this to happen and that means
that we have to either get it sponsored by Little League or USSSA to
cover insurance since it will be a youth event. Not a huge deal, just
needs some planning."

Heck, come to think on it... Kathleen also knows people on the semi-pro baseball team organization, so there is a slim possibility of organizing an Isotopes event. Like "Vasculitis Night" or whatever... That would mean reaching a more or less attentive of audience several thousand people all at once... Seeing the Vasculitis message played out on the screen and however we decide to do it. I think sporting events might be huge for us...

I love my sister. :o)

: Joseph Carpenter
Albuquerque, NM
CSS Parent, Daughter DX March '08
Central NM Chapter - Vasculitis Foundation
http://www.nmvasculitis.org

Awareness: Ask Girl Scout and Boy Scout Troops to help

My sister forwarded an idea to me today that I love.

She said, "We can possible solicit cub scout groups or girls scout troops or even
school groups to consider the Vasculitis Foundation as their community
service project."

I love her idea about recruiting GS and BS troops for community
service projects! That was unique so far and purely genius! I will put
together a pitch and get on that right away to develop a plan of action. Maybe make it a contest with prizes for certain level of donations, or

.... Hey you!... Yeah you, reading this blog... What do you think? :o) Comment this blog and share your ideas... Please.

A lot of those troops are
still getting organized and have not made commitments for what they are
going to do this year. Now is a great time to ask them for help.

: Joseph Carpenter
Albuquerque, NM
CSS Parent, Daughter DX March '08
Central NM Chapter - Vasculitis Foundation
http://www.nmvasculitis.org

About Google Health

Google Health is very promising new service that could be a great benefit to all patients and doctors. It is still developing, but worth taking a look.

"Google Health allows you to store and manage all of your health information in one central place. And it's completely free. All you need to get started is a Google username and password.

Google believes that you own your medical records and should have easy access to them. The way we see it, it's your information; why shouldn't you control it?"

This service went live at the beginning of summer 2008, after years of beta testing. It is still being developed as doctors slowly buy into the idea. I am using it to a limited extent, and may use it more as new providers become available.

It is worth considering, because whether it be this solution or some other technology, centralized online medical records that are under the patients control is an idea whose time has come. More than come... As vasculitis patients and caregivers, we should be demanding it loudly.

For more information, check out: http://www.google.com/intl/en/health/about/

Awareness Idea: Join in group walks as a team

We do not have a lot of members in our local chapter yet.

So, how about we join in other runs/walks as a team to promote awareness?

Consider the annual Run for The Zoo as an example...

Our chapter members would walk together, or in some cases, maybe get pushed in a chair, then we carry a banner or a sign.

Without being the official organizers, we would not raise money, but if the event has media coverage, it would be a great way to get some grass roots attention.

It is also possible we could get permission to put up an information booth near the start or stop point of the event. Then we could solicit donations, or at least direct people to the website, etc.

Contact Your Federal Elected Officials

Your goal is to get to know your elected official and for her or him to get to know you. Help your legislator learn about Vasculitis, the Vasculitis Foundation and important legislation. Click this image to learn more.