SUMMER 2014 ARIZONA Chapter
MS Connection Newsletter
COOKS & CHORDS page 4
INSIDE 03 THIS ISSUE
advocacy CONFERENCE update
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JOIN US FOR walk ms
upcoming local events
APPLAUSE TO all women against MS
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MS connection: Summer 2014
Board of Trustees
WElcome new board members!
WALK
NMSS
The chapter is proud to announce the appointment of two new Board members. The Chapter Board has been growing steadily over the last few years and now has 19 members. The Board of Directors is a governance Board designed to not only provide the long-term vision of, but also act as ambassadors for, the National MS Society. Please join us is welcoming our new members!
BIKE
CHALLENGE
take your involvement NMSS BIKE to the next level. Join in as an event participant, volunteer, or donor!
WALK
NMSS
BIKE
Connect with us online: arizonaMS.org facebook.com/arizonaMS twitter.com/AZMSSociety
On the Cover: Cooks & Chords
CHALLENGE
CHALLENGE
Ed Zubow is a native of Arizona and was raised in Phoenix. Ed attended Arizona State University and is a Graduate of the William P. Carey School of Business (BS Finance ’92.) While attending ASU, Ed began his work in the financial services and investment banking industry. Currently, Ed is an Investment Consultant with Wedbush Securities in Scottsdale, AZ. As a Fiduciary consultant, Ed’s practice focuses on managing the trust investments for tribal nations, private endowments, not-for-profit organizations, corporate pensions and families. Dr. Robert Djergaian is the Medical Director of Banner Good Samaritan Rehabilitation Institute. He has been in that position since 2012. Dr. Djergaian is Board certified in Physical Medicine and Rehabilitation and is part of the American Board of Pain Medicine. Dr. Djergaian received his medical degree from Thomas Jefferson University in Philadelphia. Dr. Djergaian also serves on the National Stroke Advisory Council, American Stroke Association and is the Vice President of the Board for the Brain Injury Alliance of Arizona.
Are you interested in learning more about the Board of Trustees? Contact Jim Elfline at jim.elfline@nmss.org or (480) 968-2489 x21220
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nationalmssociety.org | 1-800-344-4867
ADvocacy
ACTIVISTS SPARK CHANGE AT CONFERENCE Each year Multiple Sclerosis Activists descend on the Arizona State Capitol for the annual Activists Spark Change Legislative Conference: MS Day at the Capitol to let their voices be heard. In 2014, 30 activists impacted by MS scheduled and attended meetings with their elected representatives to talk about how their lives are impacted each day. These meetings were a wonderful way to share their stories, connect with their legislators, and impact change for all those affected by MS throughout our state. If you missed the MS Day at the Capitol this year but are interested in getting involved with MS advocacy, contact the chapter and save the date for the next Day at the Capitol in February 2015. Another way to get involved in advocacy year round is to apply for the National MS Society’s new advocacy volunteer position;
National Multiple Sclerosis Society Arizona Chapter 5025 E. Washington Street, Suite 102 Phoenix, AZ 85034 1-800-344-4867 Chairman: Marion Kelly Chapter President: Jim Elfline Editor & Design: Jessica Ishikawa Š 2014 National Multiple Sclerosis Society, Arizona Chapter
the District Activist Leader. The District Activist Leader will build and foster critical relationships with their elected officials that will help the MS movement influence policy issues at the federal, state, and local level. This volunteer position will provide opportunities to help grow our activist network, speak at community events, and help to identify issues to be addressed via advocacy.
For information on the District Activist Leader, to see a job description or to receive an application, please contact Erika Edholm at 480-455-3959. Information provided by the Society is based upon professional advice, published experience and expert opinion. Information provided in response to questions does not constitute therapeutic recommendations or prescriptions. The National Multiple Sclerosis Society recommends that all questions and information be discussed with a personal physician. The Society does not endorse products, services or manufacturers. Such names appear here solely because they are considered valuable information. The Society assumes no liability for the use or contents of any product or service mentioned.
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MS connection: Summer 2014
A Community coming together
Cooks & Chords
Who doesn’t love to eat, drink and mingle? This year, we encourage you to join us for Cooks & Chords in Phoenix and for the first time, Prescott! The Phoenix Cooks & Chords is the 8th Annual National MS Society, Arizona Chapter tasting event. This year’s event will be taking place on Saturday, September 13, 2014 in Mayo Clinic’s beautiful reception area nestled among the foothills of scenic Scottsdale. Stations of chef-prepared dishes paired with delicious spirits and wonderful music will tantalize guests as they browse packages in our raffle and silent auction. Guests will also enjoy an inspirational program that will include an update on MS research by a Mayo Clinic Neurologist. If you are interested in attending, sponsoring or volunteering for this event please contact Brandee Wessel at (480) 455-3958 or brandee.wessel@nmss.org This year, the National MS Society is happy to announce we will be expanding the Cooks & Chords event up to Northern Arizona, introducing it for the first time to the community of Prescott. The Prescott Cooks & Chords will take place at Watters Garden Center with
its natural beauty of foliage and flowers on September 20, 2014. Other details are still in the works which is why we need your support. Whether you want to attend, know a sponsor or have an item to donate for the auction, please contact Lynette Hoyt at 480-455-3962 or lynette.hoyt@nmss.org
DIY FUNDRAISING a success! Joe and Alea Gallagher donated $1,900 to the chapter for their annual Bike and Pub event. Cyclists rode through old town Scottsdale and enjoyed camaraderie of fellow cyclists while visiting local restaurant foods, and earning raffle prizes, including a beach cruiser courtesy of Arizona Wholesale Bikes, and gift cards donated by local businesses! “This is my 2nd year of organizing the ride and I’m totally addicted! It’s so much fun seeing people coming together for great causes, meeting new people and the smile I get when it comes time to donate back to others who need it,” said Joe.
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nationalmssociety.org | 1-800-344-4867
MEET THE STAFF
WELCOME CRYSTAL & LACEY! Crystal Blickfeldt: Crystal was diagnosed with MS in 2007. She started volunteering with the National MS Society to make a difference by raising money to find a cure for MS. She has two teenage boys who are her world and volunteer alongside Crystal for any event. Before joining the MS Society, Crystal worked in the accounting office of a local printer for 9 years and is pursuing her Bachelor’s degree in Business & Accounting.
Lacey Pavlovec: Lacey completed her undergraduate degree in sociology and subsequently earned a master’s degree in social work from the University of Iowa. Lacey developed her passion for working with individuals impacted by MS through her clinical social work role at the V.A Medical Center in Iowa. Lacey is honored to join the NMSS in serving individuals throughout Arizona who need information, resources, and hope in overcoming psychosocial stressors related to MS.
CONNECT WITH OTHERS
EVERY CONNECTION COUNTS
The National MS Society has helped me connect with the individuals and professionals that inspire me to share my experiences with this illness. I have been able to connect with others through various workshops and support groups that remind me I am not alone in this fight!
Reina, diagnosed in 2002 Connect.indd 1
1/30/2014 4:44:48 PM
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MS connection: Summer 2014
2014 Walk MS
Come Walk with us this fall! We have many upcoming Walks! Please join us at any or all of the following: • Saturday, October 11 - 3rd Annual Walk MS: West Valley at Westgate Entertainment District and Tanger Outlets Westgate in Glendale. • Saturday, October 18 - 7th Annual Walk MS: Prescott at the Yavapai Community College and the Northern Arizona VA Campus. We are excited to introduce a HIKE as part of the Prescott Walk MS event! The hiking trail is up and around the Yavapai College Campus and is approximately 1.35 miles. Please note, this trail is not conducive for assistive or mobility devices. • Saturday, October 25 - 2nd Annual Walk MS: East Valley at the Desert Breeze Park in Chandler. • Saturday, November 1 - 27th Annual Walk MS: Phoenix at the Phoenix Zoo and Papago Park. How can you get involved? Start a walk team or join a team! Ask your employer to sponsor the event! Volunteer before, during or after the event!
If interested in the West Valley, East Valley or Phoenix Walk MS, please contact Lisa Cleary, Sr. Development Manager, at (480) 455-3954 or email at lisa.cleary@nmss.org. If interested in the Prescott Walk MS, please contact Lynette Hoyt, Community Development Manager, at (480) 455-3962 or email at lynette.hoyt@nmss.org. Participants of all ability levels and ages can enjoy these walks. Have MS and don’t have a team, but would like to join one? Please sign up for our MS Client team, The Mission Movers. Not going to be in town or just can’t make it to the event? You can still participant as a “Virtual Walker”. Just register as such on our website and fundraise away! Register and donate today at: www.walkmsarizona.org.
to register for or get more information about any of the events listed, as well as learn about additional events, visit arizonams.org or call 1-800-344-4867 (1-800-FIGHT-MS) and press “1.”
Mark your calendar
local events Boys Night Out Tuesday, July 8, 2014 6:00 PM – 8:00 PM Tomaso’s Italian Restaurant 3225 E. Camelback Road, Phoenix
No Boys Allowed Wednesday, September 24, 2014 6:00 PM – 8:00 PM Disability Empowerment Center 5025 E. Washington Street, Phoenix Dinner will be provided
MS Moving Forward: A Newly Diagnosed Seminar Saturday, September 20, 2014 9:00 AM – 11:00 AM Arizona Chapter Office 5025 E. Washington Street, Ste 102, Phoenix This program is also available by teleconference for those living outside the Phoenix area.
CogniFitness 8-week series, Tuesdays October 7 – November 25 10:00 AM – 12:00 PM Banner Good Samaritan OutPatient Rehab Building 1012 E. Willetta Street, Phoenix Cost: $30 for the 8-week series
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Free From Falls 8-week series, Thursdays September 18 – November 6 10:00 AM – 12:00 PM HealthSouth Valley of the Sun 13460 N 67th Street, Glendale Cost: $60 for the 8-week series
Everyday Matters 5-week series - coming to Phoenix Fall 2014! EveryDay Matters will help increase your knowledge of the principles of positive psychology. Cost: $25 for the 5-week series
Aqua Exercise NAU Wall Aquatic Center 705 S. San Francisco Street Flagstaff, AZ $2.00 per week, $3.00 per week/parking To register contact Sherry Oberhardt S_ Oberhardt@hotmail.com or 928-853-5379.
Stretch and Laugh Chair Yoga Thorpe Park Community Center 245 N. Thorpe Road, Flagstaff, AZ Wednesdays 10:45 am until 11:45am $2.00 per class To register contact Melinda: 928-527-8604.
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If you would like more information about support groups in your area, call 1-800-344-4867, and press ‘1’ or contact a Listed leader.
SUPPORT GROUPS CENTRAL PHOENIX (DAY)
2nd Monday of the month, 10 AM First United Methodist Church 5510 N. Central Ave. Judy: (602) 953-9180
EAST VALLEY
3rd Thursday of the month, 10 AM Grace United Methodist Church 2024 E. University Dr., #502 Deb (480) 890-1488
FLAGSTAFF
Please call for meeting time & location: Kathy (928) 380-5253
GILBERT - Active with MS
Last Wednesday of the month, 5 PM Banner Neuro Wellness 207 N. Gilbert Rd., Ste. 205 Mark (480) 518-5971 This group is open to all levels of activity and geared towards those aspiring to become more active or who are currently involved in sports.
GLENDALE
1st Tuesday of the month, 12 PM First Southern Baptist Church 10250 N. 59th Ave. Deborah (623) 974-6944
KINGMAN
3rd Saturday of the month, 12:30 PM Kingman Regional Medical Center Cholla Room 3629 Stockton Hill Rd. Pati (928) 530-7982
NORTH SCOTTSDALE
2nd Tuesday of the month, 4:30 PM Scottsdale Senior Center 10440 East Via Linda, Room 8 Lisa (480) 860-2367
PRESCOTT VALLEY/PRESCOTT
2nd Thursday of the month, 11 AM Residence Inn - Lee Boardroom 3599 Lee Cir., Prescott Alan: (928) 710-1257 or Larry: (928) 775-7334
Sierra Vista
4th Wednesday of the month, 11 AM Country House Cafe 4373 Arizona 92 Judie (520) 378-4400
SIGNIFICANT OTHERS
Please call for meeting time & location. Lois (602) 672-9234
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nationalmssociety.org | 1-800-344-4867
SUN CITY
1st Thursday of the Month, 10:30 AM First Presbyterian Church 12225 N. 103rd Ave. Judy (623) 972-3941 or Karen (623) 584-8575
YUMA group empowerment for ms 3rd Saturday of the month, 9:30 AM Yuma Rehabilitation Hospital 901 W. 24th St. Crystal: (520) 325-0755
TUCSON CENTRAL GROUP
Please call for meeting time & location: Crystal (520) 325-0755
TUCSON MS Middle ablers + active adults Last Wednesday of the month, 6 PM - 8 PM NNS Clinical Research, LLC 5910 N. La Cholla Blvd. Kimberly: (520) 331-8710
TUCSON NORTHWEST GROUP
2nd Wednesday of the month, 10 AM Casas Adobes Congregational Church 6801 N. Oracle Rd. Cindy: (520) 887-8905 or Carol: (520) 797-0405
tucson young & unstoppables group teens & young adults Last Tuesday of the Month, 6 PM - 8 PM NNS Clinical Research, LLC 5910 N. La Cholla Blvd. Ricca: (520) 906-0445
DON’t SEE A support group IN YOUR AREA? Join us for a statewide skype group! Eldene - (480) 860-9359 1st Tuesday of the month, 3 PM
This group uses the free internet service Skype to meet from any location in Arizona. Call Eldene for more details on how to participate from the comfort of your home.
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MS connection: SUMMER 2014
delivering THE MISSION
MS Service Day
Several months ago the Arizona Chapter kicked-off an ongoing campaign for those living with MS who might need a little help with projects around the house. What A Difference A Day Makes: MS Service Day is a volunteer service day organized by the National MS Society Arizona Chapter. On this day, teams of volunteers complete projects for, or provide friendly visitation to people living with multiple sclerosis. The goal of the program is to assist people with multiple sclerosis by providing help with household chores and yard work that they are unable to do themselves due to mobility, fatigue, heat sensitivity or other limitations caused by MS.
On Saturday, March 22nd, MS Service Day had its inaugural event assisting 6 clients living with MS around the Valley with household projects. These projects included gardening and general yardwork, handyman chores, and some painting. The hard work of the over 40 volunteers was greatly appreciated by those living with MS who were assisted that day. We followed up the success of the March event with Tucson’s 1st MS Service Day on Saturday, April 26, helping a couple impacted by MS. Volunteers from Hamstra Air Conditioning in Tucson helped with several household projects around their home; including a ramp repair, painting the shed, and some small household repairs. The Tucson MS Service Day was captured by a local TV camera crew from KGUN 9 and was aired on the Sunday evening news. Because of the initial success of this program and the need in our community, the Arizona Chapter will be hosting MS Service Days quarterly. If you are living with MS and need assistance with a household project, please contact us for an application. For more information on MS Service Day or for information on volunteering, please contact Erika Edholm at 480-455-3959 or erika.edholm@nmss.org.
nationalmssociety.org | 1-800-344-4867
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research
Neuroprotection and MS After the Society’s webcast, Promising MS Research to Repair, Protect and Restore the Nervous System (www.nationalMSsociety. org/webcasts), we sat down with Dr. Rhonda Voskuhl, MS program director at the University of California, Los Angeles, to discuss the work her lab is doing in the area of neuroprotection. Could you explain how neuroprotective therapies would be different from the therapies we have now?
The therapies we have now were designed based on our understanding of the immune attack that occurs in multiple sclerosis, where immune cells attack the brain and spinal cord. They have been successful in that they reduce relapses by half or more, but they don’t halt permanent disability accumulation. Neuroprotective therapies would target cells in the brain and spinal cord, namely neurons, oligodendrocytes and astrocytes (important cells in the brain) to build up their resistance to or protection from an immune attack. The neuroprotective therapies may have minimal effect on relapses, but would likely have a great impact on permanent disability accumulation – and they may even cause some reversal or improvement in disability.
In both genders, sex hormones can directly affect brain cells. We’ve studied several mechanisms involved in neurodegeneration (nerve destruction), as well as cells related to that process. We also have focused a lot on sex hormones. Estrogen (in females) and testosterone (in males) can be very neuroprotective and directly affect brain cells. We’ve completed several preclinical studies as well as two clinical trials in sex hormones, and we have two additional ongoing trials, with another trial planned. We’d love to hear more about the research exploring sex hormones in men.
Eventually, there may be a common theme between women and men in the sense that testosterone is naturally converted to estrogen in the brain. Therefore, if you treat women with estrogen and men with testosterone, you could end up in the same place – binding to estrogen receptors in brain cells to cause protective effects. Specifically related to testosterone in men, we’ve done extensive preclinical work and
12 have seen much improvement in both walking and cognitive outcomes, which included neuroprotective mechanisms. In a small pilot clinical trial, we gave testosterone to men with MS and found a 67 percent reduction in the whole brain atrophy rate, as well as an improvement in their cognitive testing. In a paper published this year in Neuroimage Clinical, our collaborator Dr. Allan Mackenzie-Graham found that the slowing of brain atrophy in this trial was due to both a halting of cerebral cortical gray matter atrophy and also some gray matter gain or restoration during testosterone treatment. We are now hoping to follow that study with a larger study we just submitted to the National Institutes of Health. With up to 25 sites across the U.S., this would be a much larger study of 110 men with MS and will be placebo controlled. We will be looking for improvements in outcomes that are very important for disability and cognition in men with MS.
MS connection: SUMMER 2014
We are still enrolling participants in this trial with sites at University of California, Los Angeles, Colorado, New Mexico and University of Pennsylvania. This study is very similar to the study of testosterone in men – however it will have cognition as the primary outcome. We also have another study exploring estrogen’s potential effect on relapses in women with MS. Preclinical data has shown that, in addition to being neuroprotective, estriol is also anti-inflammatory. On the other hand, testosterone appears to be only modestly anti-inflammatory, but appears to be more dramatically neuroprotective. What excites you most about this area of research?
Are you seeing similar results related to cognition in women with estrogen supplementation?
We know that pregnancy is good for MS, and that estrogen is high during pregnancy. We also know that men don’t get MS as often, and when they do, it is often later in life when their testosterone has begun to drop. So we’re taking something that we know is clinically significant and relevant to people with MS, and then trying to figure that out. It’s a different approach that starts with people with MS and then asks, “What phenomena are going on here that we don’t understand? Can we figure it out? And can we capitalize on it?” It will involve many molecules and many mechanisms because it’s a dramatic clinical effect that we’re trying to understand. And I think that’s why treatments using this approach will work – they’ll work through many mechanisms rather than one.
We have an ongoing trial of estriol, the safest of the estrogens, which is present during pregnancy.
Originally published on www.MSconnection. org/blog.
Testosterone may have several other positive sideeffects in men with MS – it’s known to improve muscle mass and muscle strength, improve bone density, decrease fatigue, and improve cognition in older men going through andropause. In addition, this trial will provide valuable information about the safety of testosterone supplementation for men with MS.
nationalmssociety.org | 1-800-344-4867
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Living with ms
What MS looks like By Eliza Eastman
Multiple sclerosis has been a part of our family for a long time—for my entire life, in fact. I am now 15 years old. My grandmother, whom I call “Meme,” was diagnosed with MS when my mom was just a little bit older than me. I was not even a thought then—imagine that! Having MS as a part of our family is not easy. For a long time they did not know what was “wrong” with Meme and that was probably the hardest part of all. Once she was diagnosed, it was a little better, but still difficult. There were times when she could not walk or could not see.
Eliza Eastman with her Meme, Charlene Huffman.
I am proud of my Meme, as she is a strong lady, which I hope to be some day, too. She loved her job as a librarian and worked as long as she could. She has many loves: she loves to read and has always tried to get my sister, brother and me to love it, too. She loves to sew and we have quilts that she has made for us. She loves to shop (when her legs allow her to) and she loves to spend time with her grandchildren.
I have never really looked at my Meme as someone who has MS; I am not sure what that person would look like. Instead, I know what Meme looks like and she is someone who is strong, fun and loves her family a lot. If that is what someone with MS looks like, I think that is OK! n
One time, Meme went sliding with us in giant inner tubes down a snowy mountain, a day that we will never forget. She often comes to watch me play soccer or my brother play
hockey. She now uses a walker or cane, and I am so glad that she does because they allow her to be with us.
Eliza Eastman is a sophomore at Hampden Academy in Maine, and plans to become a physical therapist or dentist. Provided by the Greater New England Chapter.
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MS connection: SUMMER 2014
Bike ms wrap-up
BIKE MS: RIDE THE VORTEX The 28th Annual Bike MS event was held, for the 3rd year in the beautiful Sedona Verde Valley, the weekend of May 17th and 18th. With magnificent weather, riders traveled through the scenic city of Cottonwood, the wineries of Page Springs, and the gorgeous red rocks of Sedona as part of the Bike MS: Ride the Vortex. This annual event is the premier bike ride in the state of Arizona and is part of the country’s largest national cycling series supported by the Society. Bike MS: Ride the Vortex is a two-day catered cycling event hosted at the Verde Valley Fairgrounds in Cottonwood. In addition to bike routes through parts of the Verde Valley, participants enjoyed a vendor exposition, DJ, live band, food, and a beer tent at the fairgrounds. This year we also recognized riders who partook in our new program, “I Ride with MS”. As part of this program, sponsored by Genzyme, people living with MS get a special jersey to wear during the weekend and access to our VIP Massage tent. We’d like to extend a huge thank-you to all of our amazing riders, volunteers, sponsors and committee for their incredible hard work and dedication. A special thank-you goes to our sponsor, Genzyme’s MS One to One program, Biogen, Verve Tents, New Belgium, First Solar, and Verde Valley Medical Center.
Together, we have raised to-date a total of $400,00! Donations can still be turned in until July 18th, so get that money in today! If you have any questions on fundraising, please contact Erin Roediger, Development Coordinator, at (480) 455-3960 or email at: erin.roediger@nmss.org.
nationalmssociety.org | 1-800-344-4867
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funding THE MISSION
WAMS Wrap Thank you to all who supported the 2014 Women Against MS Luncheon on Tuesday, April 29th at the Arizona Biltmore Resort & Spa. Guests enjoyed a fine lunch while watching an inspirational program emceed by Tara Hitchcock. Bobbi Doorenbos joined us as our phenomenal guest speaker. Bobbi was one of the first female F-16 Fighter Pilots in the US, and has flown missions over Afghanistan and Iraq. With her diagnosis of MS in 2004, she was grounded from flying the F-16, and went on to serve as a White House Fellow under President George W. Bush, and as a Special Assistant for Defense and Intelligence to Vice President Joe Biden. She is currently the Commander of the 214th Reconnaissance Group where she now flies the MQ-1 Predator at Davis-Monthan Air Force Base in Tucson, AZ. She was absolutely amazing and really inspired our audience.
Thanks to the funds raised by the WAMS luncheon the National MS Society, Arizona Chapter offers an extensive variety of programs, services and resources for people living with MS, including family members, caregivers and other members of their support systems. We have adapted our community programs to include support groups, including but not limited to 20’s-30’s Squad, No Boys Allowed and Boys Night Out. These programs cater to the specific needs of our clients in the community. We have also implemented a Newly Diagnosed Program, a Caregiver Conference and several new exercise programs, including Yoga for MS. To get involved with our 2015 event, please contact Brandee Wessel, Development Director, at (480) 455-3958 or via email at brandee.wessel@nmss.org.
U.S. Postage
PAID
Non-Profit Org Permit 5377 Denver, CO
Arizona Chapter 5025 E. Washington Street, Suite 102 Phoenix, AZ 85034
mark your
calendars July 8:
Boys Night Out
September 13: Phoenix Cooks & Chords 20: Prescott Cooks & Chords 24: No Boys Allowed October 11: Walk MS: West Valley 18: Walk MS: Prescott 25: Walk MS: East Valley November 1: Walk MS: Phoenix See more events and programs at http://calendar.arizonaMS.org.