Monday, July 12, 2010

Public Transport options in Long Beach CA

I realize not everyone is going to be able to attend the symposium, but I will be sharing links to this with other people, so bear with me here.

If you are going to Long Beach CA at the end of the month, you would want to know how to get around. Here are some public transport options to get you all around the town:


Getting Around

Long Beach Transit
Long Beach Transit operates a Transit Information Center at 130 E. 1st Street, Southeast corner of 1st Street & Pine Avenue in the Long Beach Transit Mall.

http://www.lbtransit.com/services/passport.aspx

Telephone Information
Your friendly Transit Advisors are only a phone call away. Call Monday - Friday, 7AM to 6PM, and Saturday, 8AM to 3PM. We are close on holidays. Telephone information offers you:

Transit trip planning
Customer relations
Long Beach Transit Main Office
The administration office is located at 1963 E. Anaheim Street in central Long Beach. Telephone number: (562) 591-8753. Office hours are 8 a.m. to 5 p.m. Monday through Friday.

Operator Assistance
562-591-2301
Monday-Friday
7 a.m. to 6 p.m.
Saturday-Sunday
9 a.m. to 6 p.m.
Closed on Sundays & Holidays




Dial-A-Lift
Long Beach Dial-A-Lift is a curb-to-curb, shared ride transit service exclusively for the mobility impaired residing in and travelling throughout the cities of Long Beach, Lakewood and Signal Hill.

Who is Eligible for Dial-A-Lift Membership?
Residents of Long Beach, Lakewood or Signal Hill, who are at least 18 years of age, permanently mobility impaired and unable to board or access the Long Beach Transit fixed route bus system are eligible to apply for Dial-A-Lift membership. Persons must be able to wait at a curb up to 30 minutes. Gurney or door-to-door services are not provided by Dial-A-Lift.

More information:
http://www.lbtransit.com/Services/Dial-A-Lift.aspx

Call 562-591-8753 for your Dial-A-Lift Application

Tuesday, July 6, 2010

Reminder: NMVasculitis Chapter Meeting on July 15th at 6PM

We will once again go to The Range Cafe:

The Range Café
2200 Menaul NE, Albuquerque, NM
(505) 888-1660

For more information about this location, see the Meeting page of the chapter website:


This will be our final meeting before Meaghan and I travel to Long Beach, CA at the end of the month to attend the 2010 All Star Vasculitis Patient and Physician Symposium. Huge amounts of knowledge are available at this event from physicians, patients, and caregivers. If you really want to get a handle on your condition, this is one of the best ways to make that happen.

I extend a special invitation to any one who also plans to attend this conference. We could all meet for lunch, or at least we should be able to recognize each other while we are there. I will be the very tall guy handing out NM Chapter brochures and taking lots of notes! :o)

Or, you can come to our monthly meetings and propose a list of questions. I will write them down and try to get you some answers. If you cannot come to a meeting, send your questions to me via Email or post them to the group via our Google Groups list. Putting your questions out there is the first thing you can do to seek an answer.

Hope to see you at the next meeting!

Joseph Carpenter
NM Chapter Leader and chief dishwasher.

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.

Saturday, June 5, 2010

NMVasculitis Meeting for June 2010 will be at The Range Cafe on Menaul

Our May meeting at the Hilton Cantina was great, because I got to meet with Dennis Wiita. We shared some stories and some "patient secrets" and talked about the upcoming 2010 Vasculitis Patient Symposium, among other things. Dennis is a really great guy and takes his condition in stride. When we met, he had been enjoying a stretch of pretty good days, so we wish that to continue. It is always a pleasure to spend time with Dennis.

The Cantina was okay, but not the cozy corner I am really looking for. So those present decided together that in June we are moving the meeting to The Range Cafe, located on Menaul just about a half block East of University.

Also, I will bring plenty of brochures. I hope lots of you will come and stock up for the summer. Take them to your doctors, to your hospital appointments, and share them with your friends and family. Many times, people only take one copy. Feel free to take a dozen, or more if you think you can share them to spread the word. I have plenty right now, and one of my goals is to get rid of them so they can be out there, doing their work of spreading awareness. Will you please help me? I look forward to seeing as many of you as can come to the June Meeting.

(Those of you who are out of town, let me know you are willing to help and I will mail some brochures to you.)

The Range cafe is a long time favorite place of mine, and I have held successful meetings there for other non-profit groups. So, I know it will be good. If it works out for NMVasculitis, then I would like to settle down here for a while and focus on encouraging more people to attend the meetings. If you do not want dinner, then just come have a drink and maybe a slice if pie. The pies at the Range Cafe are fresh and very good.

As always, the event starts at 6PM and lasts at least one hour, but can go longer if we are having a good time.

Range Cafe - 2200 Menaul Blvd. NE
The Range Café
2200 Menaul NE, Albuquerque, NM
(505) 888-1660

Serving breakfast, lunch and dinner, seven days a week, The Range serves ordinary food, made extraordinarily well. New Mexico favorites such as blue corn enchiladas, burritos and award winning huevos rancheros are offered along side classic American favorites like Tom's Meatloaf and Chicken Fried Steak. Our in-house bakery serves up some of the best desserts in town in an eclectic, family atmosphere. See our menu section for our complete listing of The Range family favorites.

Menus

MAP

Monday, May 17, 2010

NMVasculitis Google Groups will be open to a wider public

I seem to get more feedback about the NMVasculitis website from people in other parts of the country than I do from anyone living in New Mexico.

HOW ARE YOU GUYS?
I rarely hear from any of you about how you are doing, so I guess I could make more of an effort to reach out to you people. I would like to know. I would like to see you contacting each other more often for support as well. Maybe we should stop going to restaurants and start going to each others houses. I may pass the hosting chore on to you as a baton we can share. Do you think this would encourage more people to participate?

MAILING LIST CHANGES
In the meantime, what was intended to be a sort of "private corner" sits unused unless I send something out. I think one other person has posted besides myself.

So, I am going to make it easier for people to sign up in hopes that a wider audience will come into the circle and contribute their ideas and experiences for the benefit of all. The mailing list will still be moderated, and I will still approve registrations, but I am allowing more people to participate here.

Be aware that with the mailing list changes the online membership will grow, and it may not remain exclusively a New Mexico mailing list. I do not know how many might choose to sign up, but NM Patients will remain the primary focus, so any local articles about our doctors, our hospitals, and how our climate affects you and your vasculitis... are certainly welcome. Please share what you know.

MORE CONTENT PLEASE
I originally hoped the patient members would be more active, and help contribute content to this website by sharing articles they read in the papers, magazines, etc. and relating significant facts they learn from their doctors. It seems people are either shy, or selfish, with this information, and do not feel compelled to share with the group as I thought they might.

I will try to do better myself by reposting the best of what I see in other news groups to keep this venue more interesting.

Last, but by no means least... Please let us know how you are doing!


Joseph Carpenter
Parent, daughter with CSS (DX March '08)

Email, Fax, Phone and Postal mail: http://www.nmvasculitis.org/Home/about-cnmvf/contact
Central NM Vasculitis Foundation Chapter - http://www.nmvasculitis.org
Vasculitis Foundation - http://www.vasculitisfoundation.org
Churg-Strauss Syndrome Association - http://www.cssassociation.org/

Mark Your Calendars for the 2010 All Star Vasculitis Patient Symposium - July 30-August 1, 2010
http://www.vasculitisfoundation.org/2010vasculitis-symposium

May Meeting of NMVasculitis at the Hilton Cantina on University

Our next meeting will be held at 6PM this Thursday, May 20 at the Cantina Lounge in the Hilton Hotel. I believe they have some indoor and outdoor seating, which may work well with the summer months coming up. This venue is centrally located, and also close to the freeway so locals and out of towners alike should find it easy to get off at Menaul and get in there easily.


Cantina Lounge
Have a favorite beverage while enjoying a light snack under the blue skies of New Mexico. Lounge offers food specials and refreshing drinks in a tree-lined courtyard overlooking our pool. Local favorite.



La Cantina Menu

Location: Midtown/University
1901 University Blvd. N.E.
Albuquerque, NM 87102


Phone: (505) 884-2500
Toll Free: (800) 274-6835
Fax: (505) 880-1196


Days Open: Daily Monday - Sunday 2PM-11PM
Attire: Casual
Complimentary Wireless Internet
Website


This should be a welcome change as we had exhausted the menu at McAllisters after several months of staying in one place. I welcome you all to join us this coming Thursday!


Joseph Carpenter
Parent, daughter with CSS (DX March '08)

Email, Fax, Phone and Postal mail: http://www.nmvasculitis.org/Home/about-cnmvf/contact
Central NM Vasculitis Foundation Chapter - http://www.nmvasculitis.org
Vasculitis Foundation - http://www.vasculitisfoundation.org
Churg-Strauss Syndrome Association - http://www.cssassociation.org/

Mark Your Calendars for the 2010 All Star Vasculitis Patient Symposium - July 30-August 1, 2010
http://www.vasculitisfoundation.org/2010vasculitis-symposium

Tuesday, May 11, 2010

Rituximab - Rheumatoid Arthritis Drug Lowers Flu Shot Effectiveness

Rheumatoid Arthritis Drug Lowers Flu Shot Effectiveness - Drugs.com MedNews
Rheumatoid Arthritis Drug Lowers Flu Shot Effectiveness

MONDAY, Jan. 11 -- New research offers a caution to rheumatoid arthritis patients who take the drug rituximab (Rituxan): The flu vaccine is safe, but it's ineffective during the first six months following treatment with Rituxan.

The researchers also found that previous flu vaccination does help provide some protection against the flu, and the vaccine won't make the arthritis symptoms worse.

The study findings are published in the January issue of Arthritis & Rheumatism.