Showing posts with label VF. Show all posts
Showing posts with label VF. Show all posts

Thursday, September 9, 2010

Vasculitis Research Money - Where Does It Come From?




Vasculitis Research Money - Where Does It Come From?


We learned at the 2010 Vasculitis Symposium that the Vasculitis Foundation (VF) is the number one private funder of clinical research concerning vasculitis. The VF has collected and spent approximately one million dollars on research for vasculitis. That is a step in the right direction. But like any lucky coin, there are two sides. Before you count your laurels folks, lets take time to look at the flip side.

For example, where is the government funding going? Take a look for yourself:
Estimates of Funding for Various Research, Condition, and Disease Categories (RCDC)

"This table displays the annual support level for various research, condition, and disease categories based on grants, contracts, and other funding mechanisms used across the National Institutes of Health (NIH).

At the request of Congress, the NIH embarked on a process to provide better consistency and transparency in the reporting of its funded research. This new process, implemented in 2008 through the Research, Condition, and Disease Categorization (RCDC) system, uses sophisticated text data mining (categorizing and clustering using words and multiword phrases) in conjunction with NIH-wide definitions used to match projects to categories. The definitions are a list of terms and concepts selected by NIH scientific experts to define a research category. The research category levels represent the NIH’s best estimates based on the category definitions."


Look closely. You will not see "Vasculitis" listed on that table.

Crohns Disease gets 58 million. If you have gastrointestinal symptoms, maybe they will learn something that will help you down the road.

Arthritis gets 259 million dollars, and many vasculitis treatments are the so called "red-headed step children" of treatments that were discovered arthritis research. So perhaps that will yield some results that, in a decade or two, maybe, will trickle down as new treatments for vasculitis patients.



Tuesday, June 29, 2010

Still time to make plans to attend 2010 Vasculitis Patient Symposium

http://www.vasculitisfoundation.org/2010vasculitis-symposium

Symposium Logo
 
First Time in Western USA, Leading Vasculitis Experts and Patients to Assemble for Vasculitis Foundation Symposium
 
All Star Vasculitis Symposium, in Long Beach, California
 
July 30 - August 1, 2010
 
 Register Today!
 
 Excellent Opportunity to Learn About the Latest Research Findings and Treatment Recommendations for Over 15 Forms of Vasculitis
 
I attended vasculitis symposiums in Cleveland and Baltimore. I found them both to be very organized, educational, and informative. Seeing so many volunteers and doctors give so much of their time, made it very gratifying for me. I understood that a lot of people care and I am not alone in my vasculitis journey. -- Mercy LaVilla, diagnosed with PAN in 1999, remission in 2005
 
Wealth of Knowledge in One Place
 
The All Star Vasculitis Symposium will be held July 30 - August 1, 2010 at the beautiful Westin Long Beach Hotel in Long Beach, California. This is the first Vasculitis Foundation symposium held in the western USA. 
 

Five Reasons to Attend
 
1. Benefit from the knowledge and experiences of attendees at the world's largest meeting of vasculitis patients, family members and medical experts

2. Expand your disease knowledge by learning about treatment advances, research, quality-of-life issues, and integrative medicine 
 
3. Connect with other vasculitis patients and families for fun and fellowship

4. More than 35 sessions covering all 15 forms of vasculitis, presented by world-renowned experts

5. Network opportunities bring hope, encouragement, and empowerment

Still Not Convinced? 
See the list below of presentations and speakers scheduled to date.
 

General Sessions 

Vasculitis 101 - Overview of Vasculitis and the Individual Diseases
Introduction:  Vasculitis, a family of diseases, how do they relate to each other? Peter A. Merkel, MD, MPH, Director, Vasculitis Center, Boston University School of Medicine

Churg Strauss Syndrome, Microscopic Polyangiitis, Wegener's granulomatosis 
Luis Felipe Flores-Suárez, MD, Head, Primary Systemic Vasculitides Clinic
Instituto Nacional de Enfermedades Respiratorias


Giant cell (Temporal) Arteritis, Polymyalgia Rheumatica, Takayasu's Arteritis, Central nervous System Vasculitis
Cornelia Weyand, MD, PhD, Immunology and Rheumatology, Stanford University

Cryoglobulinemia, Henoch-Schönlein purpura, Polyarteritis nodosa, Secondary VasculitidesPhilip Seo, MD, Co-Director, The Johns Hopkins Vasculitis Center

Ask the Experts Q&A Panel
Drs. Merkel, Flores-Suárez, Weyand and Seo
  
Vasculitis and Our Pediatric Patients and Their Parents 
Join parents and young patients as our pediatric vasculitis experts discuss the management and most current treatment options for younger patients. Attendees will be able to ask questions, meet other parents/patients, share experiences, concerns, and what works for them.
Andreas Reiff, MD, Head, Division of Rheumatology, Childrens Hospital Los Angeles
David Balfe, MD, Medical Director, Pulmonary Stepdown Unit, Cedars-Sinai Medical Center 
New and Emerging Therapies in Vasculitis
Welcome and Introductions

Peter A. Merkel, MD, MPH, Director, Vasculitis Center, Boston University School of Medicine

Understanding Immunology for the Patient with Vasculitis
Paul A. Monach, MD, PhD, Vasculitis Center, Boston University School of Medicine

What's Happening Now in Vasculitis Clinical Research:  The Vasculitis Research Clinical Research Consortium (VCRC), the European Vasculitis Study Group (EUVAS) and other Vasculitis Research Programs 
Peter A. Merkel, MD, MPH, Director, Vasculitis Center, Boston University School of Medicine 
Recently Completed Clinical Trials in Vasculitis and Implications for all Patients: 
Rituximab (RAVE Trial results)
Ulrich Specks, MD, Division of Pulmonary and Critical Care, Mayo Clinic
 
Other Therapeutic Advances 
Carol A. Langford, MD, MHS, Director, Cleveland Clinic Center for Vasculitis Care and Research  
Ask the Experts Q & A Panel
Drs. Langford, Merkel, Monach and Specks

Small Vessel Vasculitis
For attendees interested in Wegener's granulomatosis, microscopic polyangiitis, Churg Strauss syndrome, relapsing polychondritis, Henoch-Schönlein purpura, polyarteritis nodosa, cryoglobulinemia, vasculitis associated with connective tissue diseases), central nervous vasculitis, Behcet's disease, and other small vessel diseases.

Standard of Care Therapy for Small Vessel Vasculitides
Paul A. Monach, MD, PhD, Vasculitis Center, Boston University School of Medicine 

Dealing with the Chronic Medical Effects of Small Vessel Vasculitides 
Philip Seo, MD, Co-Director, The Johns Hopkins Vasculitis Center 
Ask the Experts Q & A Panel Drs. Seo and Monach
Large Vessel Vasculitis For attendees interested in Takayasu's arteritis and Giant cell arteritis (Temporal arteritis)

Standard of Care Therapy for Large Vessel Vasculitides 
Cornelia Weyand, MD, PhD, Immunology and Rheumatology, Stanford University 
Dealing with the Chronic Medical Effects of Large Vessel Vasculitides
Curry Koening, MD, MS, Division of Rheumatology, University of Utah

Ask the Experts Q & A Panel Drs. Weyand and Koening

Breakout Sessions Ear/Nose/Throat in Vasculitis 
Robert S. Lebovics, MD, F.A.C.S., Otolaryngology/Head & Neck Surgery, New York City, New York
Matthew L. Finerman, MD, Otosurgical Group, Medical Clinic, UCLA
 
Family, Friends and Caregivers Support Meeting (please, no patients) 
Donna Benton and Claudia Ellano-Ota, LCSW
Orange Caregiver Resource Center, California, St. Jude Brain Injury Network


Gastrointestinal Issues in Vasculitis 
Kenneth Warrington, MD, Division of Rheumatology, Mayo Clinic, Rochester, Minnesota 
Kidneys in Vasculitis 
Patrick Nachman, MD, University of North Carolina Kidney Center, Chapel Hill, North Carolina
Ramnath Dukkipati, MD, Medical Director, Interventional Nephrology, Harbor-UCLA 

Pharmacology 
Christine Vu, Pharm.D, Department of Pharmacy Services, Cedars-Sinai Medical Center 
Assembling Your Medical Records/Seeking a Second Opinion 
Megan E. Clowse, MD, MPH, Rheumatology and Immunology, Duke University
Carol Langford, MD, MHS, Director, Cleveland Clinic Center for Vasculitis Care and Research 
Lung Issues for the Vasculitis Patient (asthma, chronic breathlessness, respiratory infections) Ulrich Specks, MD, Division of Pulmonary and Critical Care, Mayo Clinic
Vasculitis Spanish Language Session 
Luis Felipe Flores-Suárez, MD, Head, Primary Systemic Vasculitides Clinic, Instituto Nacional de Enfermedades Respiratorias 
Building a Team:  Patient and Physician Communication 
Sharon Chung, MD, Division of Rheumatology, University of California - San Francisco
Grace Eisen, RN, Lake City, Michigan, VF Board of Directors 
Eyes in Vasculitis (inflammatory eye disease, low vision, cataracts, glaucoma, eye health)James A. Garrity, MD, Department of Ophthalmology, Mayo Clinic 
Lung Issues for the Vasculitis Patient (asthma, chronic breathlessness, respiratory infections) 
Ulrich Specks, MD, Division of Pulmonary and Critical Care, Mayo Clinic 
Stress Management: Coping Skills and Strategies 
Lisa Graziano, MA, Executive Director, Prader-Willi California Foundation
Understanding Lab Tests for Patients with Vasculitis 
Patrick Nachman, MD, UNC Kidney Center, University of North Carolina - Chapel Hill 
Reproductive Health Issues for Women and Men with Vasculitis: Fertility and Pregnancy 
Megan Clowse, MD, MPH, Rheumatology and Immunology, Duke University
Getting Involved in Vasculitis Patient Advocacy 
Jane Dion, Founder and President, Churg Strauss Syndrome Association
Cassie Keane, President, Vasculitis Foundation Board of Directors
Cindy Webber, Co-Chair, Education and Awareness Council
 
Peripheral Neuropathy Associated with VasculitisAnnabel Wang, MD, Neurology, Neuromuscular Disorders, University of California - Irvine
 
Vasculitis Medication Review (dosing/toxicities)Kenneth Warrington, MD, Division of Rheumatology, Mayo Clinic Vasculitis: Possible mechanisms. Role of autoimmunityNabih I. Abdou, MD, PhD, FACP, Center for Rheumatic Disease and Allergy
Disability and Workplace Issues for Vasculitis Patients
TaMiko Crockett, Public Affairs Specialist, Tri Counties Area, Social Security Administration
Essie Landry, Public Affairs Specialist, Tri Counties Area, Social Security Administration

 
Group Discussions With Faculty 
Behcet's Disease, Henoch-Schönlein purpura, Kawasaki Disease 
Curry Koening, MD, MS, Division of Rheumatology, University of Utah
Philip Seo,
MD, Co-Director, The Johns Hopkins Vasculitis Center
 
Churg Strauss syndrome
Carol Langford, MD, MHS, Director, Cleveland Clinic Center for Vasculitis Care and Research
Ulrich Specks, MD, Division of Pulmonary and Critical Care, Mayo Clinic 
 
 
Giant cell arteritis (Temporal arteritis)/Takayasu's Arteritis Peter A. Merkel, MD, MPH, Director, Vasculitis Center, Boston University School of
Medicine
Cornelia Weyand, MD, Ph.D, Immunology and Rheumatology, Stanford University 

Microscopic polyangiitis
Sharon Chung, MD, Division of Rheumatology, University of California - San Francisco
Megan E. Clowse, MD, MPH, Rheumatology and Immunology, Duke University
Patrick Nachman, MD, UNC Kidney Center, University of North Carolina - Chapel Hill 

Pediatrics Andreas Reiff, MD, Head, Division of Rheumatology, Childrens Hospital Los Angeles
David Balfe, MD, Medical Director, Pulmonary Stepdown Unit, Cedars-Sinai Medical Center 

Polyarteritis nodosa/Cryoglobulinemia Eric Hoy, Ph.D, MS, Department of Medical Laboratory Sciences, The University of Texas
Southwestern Medical Center
Ramnath Dukkipati, MD, Medical Director, Interventional Nephrology, Harbor-UCLA 

Wegener's granulomatosis
Nabih I. Abdou, MD, PhD, FACP, Center for Rheumatic Disease and Allergy
James A. Garrity, MD, Department of Ophthalmology, Mayo Clinic
Robert S. Lebovics, MD, Otolaryngology/Head & Neck Surgery, St. Roosevelt Hospital
Paul A. Monach, MD, PhD, Vasculitis Center, Boston University School of Medicine 

 
 
And That's Not All!
Keynote Address: Vasculitis - Where We've Been, Where We're Headed Gary S. Hoffman, MD, MS, Director of Senior Staff Matters, Professional Staff Affairs Office, Cleveland Clinic 
 
Disease-Specific Round Table Discussion Sessions 
Moderators: VF Education and Awareness Council 
 
Young Adults Icebreaker (ages 16-25, patients only) 
Moderator:  Kim Golbuff, MBA
Motivational Presentation: Don't Stop Short of YOUR Miracle
Julie Garton-Good, DREI, C-CREC, Port Saint Lucie, Florida
 
Disease Group Dinners
To be announced 
 
 
Have Some Fun! 
 
All Star Recognition, Celebration Banquet and Hollywood Walk of Fame! Tonight we're putting on sequins, tiaras, glitter and glitz and celebrating! Join us on the VF red carpet for an evening of food, fun and entertainment. Participate in the costume contest and win a prize. Experience the paparazzi and adoring fans. Come as your favorite movie or TV star or TV doctor!  (Participation is completely voluntary! Come to have fun.)  
Long Beach and Southern California Attractions 
Over 100 area restaurants. Attractions include the Aquarium of the Pacific, the Queen Mary, Disneyland, Knotts Berry Farm, and Los Angeles. Plan some vacation fun while you are here.
 
 
Learn More and Register 
 
Please go to http://www.vasculitisfoundation.org/2010vasculitis-symposium for detailed information and to register. Seating is limited, please register as soon as possible. Registration fee includes Saturday and Sunday continental breakfast and lunch, Friday night dessert reception, Saturday night banquet, and daily refreshment breaks.

Thursday, September 17, 2009

September Chapter Meeting Report

Location:
McAlister's Deli
2200-A Louisiana Boulevard, NE
Albuquerque NM 87110

Attendees:
Joseph Carpenter
Meaghan Carpenter

I will keep this short because Meaghan is not feeling well.

We enjoyed the change of pace here at McAllisters. They have booths or chairs and free wireless. It is also not too busy in the evenings, so this is a good place.

The menu is varied enough that someone could have a full dinner, soup, sandwich, or just a cup of coffee or tea. The point is I like to pick places that have a range of price options.

The Uptown Mall is a bit more upscale than some other places, but I will keep looking in this area for next months meeting. I like that is is centrally located. While The Albuquerque Grill was technically more centrally located if you look at the absolute center of the city, this uptown mall area has three malls and is well known by everyone who lives in the area.

We will be exploring other venues and also we will be going to social events. Like movies, the zoo, etc. My thought there is any active members will share in the decision about where we go each month. We will wear VF gear and just keep spreading the word about vasculitis. Just like we do just about every day.

I wear the VF pin every day and people ask me about that, which leads to a conversation about vasculitis. Not sure how widely that spreads the news, but I figure every bit helps.

I also spoke to some booth bolders at the NM State Fair yesterday, and learned who the significant people are to talk to when we get ready to try that. This year I just could not see manning a booth by myself for two weeks. Plus there is a booth fee, and we have no budget. But that is on the list for the future.

Perhaps I could trade time for space in a deal where we man someone else's booth for part of the time, and in return they allow us to put VF information on their table. I will speak to American Red Cross, etc, about that idea for future events.

Anyway, we are off to look at the bookstore. See you next month!

:Joseph W. Carpenter
Chapter Cook and Dish Washer in Chief

Monday, September 22, 2008

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

Sunday, August 31, 2008

Vasculitis Awareness Week Handbook

You can get involved right away. Do not wait, do not pass go, you sure are not going to get $200. Still, I encourage you all to consider the things you can do right now to spread the awareness of vasculitis. By doing something large or small, your action will increase the likelihood that research will be funded, and this family of diseases will see improved treatments and maybe one day, a cure!

: Joseph Carpenter

Download the Vasculitis Awareness Week Handbook and Begin Planning Now! | Vasculitis Foundation

Mark your calendars for Vasculitis Awareness Week, which will be held September 21-27. Start planning your advocacy and fundraising efforts now!

Vasculitis Awareness Week is the VF’s single largest annual effort at raising awareness. And we need your help to make it successful. Write a letter to your congress person; plan a walk; ask your city government to publicly acknowledge Vasculitis Awareness Week; send an email to your friends and family and ask them to contribute to your efforts; take brochures to your local doctors and ask them to display them in their offices. There are many different activities that you can plan that will help raise awareness and much-needed funds. http://www.vasculitisfoundation.org/awarenessweekbooklet2008