January 2014 Newsletter
Events, Happenings, and News in the
Utah P2P JA Family Network
THANK YOU!
We wanted to give a big “Thank you” for all of you that helped and/or participated in the annual Jingle Bell Run/Walk for Arthritis. Thanks to everyone, it was our most successful event to date! Here are some highlights...
1. In 2013 we raised $35,151!!!!
2. The money raised at this event will go to funding vital research for arthritis treatment as well as programs such as our annual JA Family Day and exercise programs that help patients lead healthier, more active lives
3. We had close to 300 participants, 75 volunteers and about 100 entertainers who all came to help this event be a huge success!
4. We had fun activities for kids, great vendors as well as a ‘Jingle Bell Boutique’, fun auction and raffle prizes, fabulous sponsors, a visit from Santa Claus and amazing honorees!
For a more detailed wrap up of the Jingle Bell Run/Walk for Arthritis,
please see Meghan’s ‘Blurb’!
A GLIMPSE
Of what is on our agenda
To keep you connected in 2014!
· February/March – Zone Event
· April – Quarterly Newsletter
· May – Arthritis Walk
· July – JA National Conference/Quarterly Newsletter
· August – Zone Event
· September/October – JA Family Day/Quarterly Newsletter
· December – Jingle Bell Run
Committee Members Needed!
If you would like to get involved with The Arthritis Foundation or if you are looking for a chance to volunteer – we have a spot for you! Please consider joining our “Walk to Cure Arthritis” planning committee. Meet great people, have a voice in our event, and help us fundraise for a cure! Contact Alison Tuft for more information at 801-536-0990 or email her at atuft@arthritis.org
Don’t forget to ‘like’ our Facebook page for the Utah Parent 2 Parent Peer 2 Peer JA Family Network!
*BLURBS*
From the P2P Leaders and Zone Leaders…
A word from Meghan…
Wow, what a year 2013 ended up being! I had the privilege of wrapping up my year seeing the Jingle Bell Run/Walk for Arthritis become a huge success! As a project that I had been working on for over a year, I was pleased to see the hard work of my dedicated committee come to fruition in the form of an amazing event! Despite the cold weather and snow falling that morning, we had an amazing turn out at the Grand Hall at the Gateway. We had a wonderful venue that offered a festive and fun environment as well as warmth from the elements before and after the 5K run and 1K kids run. I want to give a shout to my amazing committee who came from both the JA community and those who have no connection to Arthritis at all who just want to make things easier for ‘our’ community! A huge thank you to April Bays, Annie Viola and Jody Heaton who were instrumental in helping make this event such a success! For the first year, we had three honorees. In the past we’ve had 1 honoree, but we were pleased to have a youth honoree, a medical honoree and community honoree. These honorees were Alissa Bays-an adorable 2 year old who is successfully winning her battle with JIA, Dr. Paul Wirkus-a local pediatrician who has a special knowledge and connection to JA, and Kim Johnson-ABC4 new anchor who also served as our emcee. Each one of these honorees had a unique story to tell and we were pleased to have them involved! Where would we have been without our amazing sponsors? All of these local companies were an integral part of the Jingle Bell Run/Walk for Arthritis! The following companies were hugely supportive of this fun event: Wasatch Pediatrics, Zion’s Bank, Crio Bru, Farris Gerard Photography, ABC 4 News, CW 30 and Slug Magazine. And of course, the big man up north, Santa Clause, made his way to Salt Lake City to spend time with all the kids and the young at heart! We are looking forward to beginning the process of planning the 2013 Jingle Bell Run/Walk for Arthritis. We will be solidifying the date in the next month (yes, we are already thinking about the holiday season), so be on the lookout for more information coming soon!
A word from Annie…
Happy New Year! I am so excited to see how much closer we can get this year to finding a cure for arthritis! We have so many exciting events coming up and opportunities to connect with other JA families. Please continue being a voice for JA and spread the word about our network so that no family has to deal with this disease alone. Let’s start this year with a question: Ask yourself if you or anyone in your family would like to volunteer for the Arthritis Foundation. This is such a great way to get to know the people behind the name, connect with other families, and find support. I have been so blessed through volunteering. Not only has it strengthened my support system, but it has allowed me to encourage and serve others. I am so privileged to be a part of such an amazing network of people whose lives have been affected by arthritis. Let me know how I can help you! If there is something that you would like to see from this network, or any ideas on how to connect with other families, please feel free to share them. I am here ready to listen, ready to take action, and ready to tackle the everyday struggles with you! One of our biggest goals this year with our network is to get families together. We really want you to get to know other families in your area. Your zone leaders will be reaching out to you and inviting you to zone events and we will keep you in the loop of all events sponsored by the Arthritis Foundation. Please try and be a part of these events to reach out to other JA families and network with us. Each of you has something to offer, whether it be friendship, support, or just another family who can share experiences of “I have been there, and done that.” Let’s be reminded of what the mission of our network is, “to build a support system by providing opportunities for parents, kids, and teens to connect while navigating the world with a rheumatic disease.”
So let’s JOURNEY TOGETHER and make 2014 a year of encouragement, support, and connection!!!
A word from April in the North…
The first Northern Zone get together is planned for February 22nd at 2 p.m. and will be at the Ogden George S. Eccles Dinosaur Park/Museum. This has a little something for all ages—an indoor museum where there are fossils, bones, and displays to look at, including some animated replicas, a kid’s quarry, and then outside are life sized dinosaurs, trails, and a playground too. There are several picnic tables around if anyone wants to bring food, they do allow it! Please bring the whole family and let’s get to know one another on our first adventure! Each family will be responsible for their own admission, but if enough RSVP we will get a group discount. Watch for an invite in your email soon!
A word from us (Meghan and Annie) in SLC…
We would love to get to know every family here in SLC and all the families in the Provo area. Please join us in attending the first get-together of 2014. This event will be held at Fat Cats at 3739 S and 900 E in SLC on Saturday, February 22nd from 11am until 1pm. Bring the whole family to bowl, eat snacks, play arcade games, and connect with other JA families. Please RSVP at leaders.janetwork@gmail.com and state the total of how many will be bowling and the children’s ages so we can put children of the same ages together. The prices are $4.49 per game for adults and $3.89 for children. Shoe rentals are $2.99/2.49. Also don’t forget your quarters for the arcade! We will reserve the lanes and you bring your family! Contact us with questions. Can’t wait to see everyone there!!!
A word from Sarah in the South…
As a Southern woman, I love that title. Happy New Year to all our families, I can’t believe it’s 2014 already. I feel like I haven’t seen you in quite some time. We recently visited with many of our families at this year’s Jingle Bell Run that was before Thanksgiving. I am looking forward to gathering all our families together on Feb 22nd for an open house here in Hurricane. I have currently been working on getting all of Chris’s files transferred to his new Rheumatologist in Las Vegas. We will keep everyone updated on how it goes and what our thoughts are on the staff in Nevada. We wish all of our families’ good health and many blessings in the coming year. I just can’t wait to see everyone again. Sarah
Zone Leader Needed!!!
If you live in the Provo area (or surrounding area) and are interested in being a zone leader, please contact us at leaders.janetwork@gmail.com
Meet Chris Cloud!
Hi my name is Chris Cloud and I am 16 years old. I have Entheistis Related Arthritis/Poly JIA. I live down here in beautiful Southern Utah in Hurricane, just outside Zion National Park. I love hiking and being outdoors in the canyons, unfortunately I can’t be out much. Hiking has become an issue due to my JA. I am just finishing up my Eagle Board of Review and am now considered an Eagle Scout Elect. I am still active in my local JROTC unit here at Dixie High. I am a Staff Sergeant and hoping to rank up at the end of the month.
A word to all my fellow kids and Teens with JA……Don’t let it stop you from achieving your goals. You can still do it! You may need to find a different approach to what you want but it is possible. I just got my Eagle when very few thought I would make it. Don’t give up!
Here are some things about me:
Things I like to do: Play video games, hang out with friends
My Favorite subject in school: Math
My favorite food: Pizza
My favorite animal: Monkey
My favorite game: Skyrim
What I want to accomplish in life: be a graphic designer and video game designer
I have arthritis but… I still do scouts, ROTC, and other things.
Things I do to help me feel better when my joints hurt are… heat packs and rest.
One last special thing about me is… I’m working on getting my driver’s license.
Registration is now open!
The 2014 National JA Conference
When: July 3 – 6
Where: Keystone, Colorado
“The Juvenile Arthritis Conference offers a chance to meet other families going through similar challenges, share stories, learn new techniques for managing juvenile arthritis, and have fun! The whole family is invited!” – Arthritis.org
~MARK YOUR CALENDARS~
Walk to Cure Arthritis
Sugar House Park – May 17th
The Arthritis Foundation will be hosting the annual ‘Walk to Cure Arthritis’ on May 17th. Mark your calendars, start forming your teams, and get ready to be flabbergasted at some exciting changes to this already amazing event! Please be watching for more information, fun contests, monthly incentives, and how our network can be directly involved this year!!!
You are not going to want to miss this!!!
AUgust 2013 Newsletter
Events, Happenings,
and News in the Utah P2P JA Family Network
Save
The Date!
The
Salt Lake Zone - Family Open House
August
17th, 2013 1-4 pm
~Upcoming
events~
Utah
Juvenile Arthritis Family Day!!!
October 5th
from 10:00am – 1:00pm
Discovery
Gateway Children’s Museum
Join us
to learn about arthritis, network with other JA families, and enjoy a day of
fun activities! Visit www.utahjafamilyday.kintera.org to
register your family.
New
Website for JA Families!
Kidsgetarthritistoo.org
If
you haven’t gotten a chance to look at this new website made available by the
Arthritis Foundation, then you are missing out.
It has wonderful information, stories, and connections. Visit it today!
Don’t
forget to ‘like’ our Facebook page for the Utah Parent 2 Parent Peer 2 Peer JA
Family Network!
A word from Meghan…
I truly love volunteering with the Arthritis
Foundation! In addition to working with Annie to facilitate the Parent 2 Parent
Peer 2 Peer Network, I also have the privilege of being the chairman for the
Salt Lake City Jingle Bell Run/Walk for Arthritis. This is my third year of
being involved with this event and every year it just gets better and better
and bigger and bigger! My involvement has also allowed me the opportunity to
serve on the National Jingle Bell Run/Walk Committee. From working with the
Arthritis Foundation in this capacity, I have had the chance to learn about how
funds are raised, the different means of delivering our mission, how research
in conducted and what is going on at the national level to help our kids. I can honestly say that our whole family has
benefitted from being involved! I hope that you all will join us this year on
December 7th at the Gateway Mall and kick off you holiday season
right! I promise, you will not be disappointed! The Jingle Bell Run/Walk for
Arthritis is the nation’s largest holiday themed 5K completely dedicated to
raising funds and awareness for Arthritis and related diseases!
Jingle
Bell Run/Walk 2013!
When:
December 7th
Where:
Gateway Mall
Why:
To raise awareness and fundraise for a cure
We
are also looking for committee members.
If you would like to help us put together this great event, please
contact us!
A word from Annie…
My family and I had the wonderful opportunity to
attend this year’s JA National Conference.
I cannot express how much this conference helped our family grow
stronger. My husband and I were able to learn a lot about our daughter’s
specific disease, the different medications that are available, immunology,
genetics, the best ways to help finance the medical care, and so much
more! My children each had their own
classrooms where they played with other kids, made crafts, ate snacks, sang songs,
went swimming, and made lasting friendships.
We were also able to get to know other JA families from all over the
nation. The support that was provided by the hundreds of families in
attendance, the amazing staff, and all the wonderful volunteers was incredible!
We definitely walked away feeling very confident
that through the research and hard work of so many wonderful people and the
Arthritis Foundation, there will be a cure in the near future! I would like to
encourage all JA families to attend next year’s conference and benefit as we
did! It will be an experience you will never forget!!!
Viola's Family Pictures from this year's JA Conference
Meet Alissa Bays!
My name is Alissa and I have Polyarticular Juvenile Idiopathic Arthritis—it’s in my fingers, toes, ankles, wrists, knees, and an elbow. I don’t like taking injections, but I always bounce right back and know it helps me. I have an older sister who always wants to tell me what to do, but I know what I want and nobody can stop me! Sometimes my legs hurt, but most of the time nobody can tell anything is wrong with me because I just keep going. I really like to dance, and if a good song comes on you know I will be right on beat! I hope one day I won’t have to see a doctor anymore, but until then I will keep fighting and doing hard things!
Here are some
things about me:
Things I like
to do: Play house,
help cook, run through sprinklers
My Favorite
Color: Pink
My favorite
stuffed animal is: My
puppy
My favorite
food: Mac
n Cheese
My favorite
animal to see at the zoo: The Tiger
My favorite
movie: Wubzy
My favorite
toy: Baby
Dolls
I have
arthritis but….
It doesn’t stop me from playing, running, and jumping. Just try and tell me to slow down, and see what
happens!
Things I do to
help me feel better when my joints hurt are…tell mommy so I can have some
medicine, see my doctor, or use essential oils.
One last
special thing about me is…I am one of this year’s Jingle Bell Run honorees
and have been marching in parades dressed as Cindy-Lou Who!
If
you would like to see your child featured in our quarterly P2P newsletter,
please contact us. We would love to tell your story! Leaders.janetwork@gmail.com
One
Last Thing! The
National JA Conference for 2014 will be held in Keystone, Colorado from July 3rd
– 6th. Mark it on your
calendars and start making plans to attend this wonderful event! More information coming soon!!!
APRIL 2013 NEWSLETTER:
Save
The Date!
Parent’s Networking
lunch!
May 4th,
2013 1-3 pm
Mark the date on your
calendar for an enjoyable Parents Network potluck lunch! Watch your email for more
information!
AFamilies
Newletter
Have
you subscribed to the AFamilies newsletter yet? If you haven’t yet, you are
missing out! Visit http://www.arthritis.org/utah/juvenile-arthritis/
and subscribe to this fantastic quarterly newsletter. You will find awesome
information about programs and resources available to families who have
children with juvenile arthritis. You will be able to ‘meet’ several kids from
around the region and hear their inspiring stories.
Also,
don’t forget to ‘like’ our facebook page for the Utah P2P JA Family Network
page. https://www.facebook.com/pages/Utah-Parent-2-Parent-Peer-2-Peer-JA-Family-Network/369980456442464
Arthritis
Walk 2013!
Have you created your team for the 2013 Arthritis
Walk? This is a fantastic annual event put on by the Arthritis Foundation to
help raise funds and awareness for Arthritis and related diseases. We have started a group of P2P JA Family teams. We
would love to have you create your team under the P2P Family Group so we can
have a great turn out!
Visit http://www.arthritis.org/utah/arthritis-walk/
and visit the page for the SLC Arthritis Walk. There you will find all of the
information that you need to start your team. Don’t wait! We want to get
t-shirts for all of the families in the P2P Network and we will need all the
info for the shirts by APRIL 28th!
Meet Annalee Viola!
Hi! My name is Annalee Viola and I am turning 4
today! I am so excited to turn four that
I have been talking about my birthday for the last month, and it is finally
here! I can’t wait to blow out all of
the candles on my cake, and open my gifts.
I am hoping for lots of sidewalk chalk, bubbles, and sand toys for my
sand box.
Here are some
things about me:
Things I like
to do: I love to play
outside! I also love to go to Disney on
Ice and watch the ice skaters!
My Favorite
Color: Pink
My favorite
stuffed animal is: My
seahorse that lights up and plays soothing lullabies. I also love my giraffe that has a rice
heating pack in its belly that I use when my knees are sore.
My favorite
food: Mac
n Cheese!
My favorite
animal to see at the zoo: The Polar
Bear – last time he came right up to the glass where I was standing!
My favorite
movie: Tangled
and The Lorax – I can’t decide between the two!
My favorite
toy: My
art easel. I love to draw pictures and
color with markers.
I have
arthritis but….
I am in gymnastics and I love it very much!
I love to do the balance beam and the bars.
Things I do to
help me feel better when my joints hurt are…I love to take a bath and soak
in the bubbles. The nice warm water
always makes me feel better! I also have
a ton of bath toys that I play with!
One last
special thing about me is…That I am named after three generations – my mom,
my grandma, and my great-grandma!
If
you would like to see your child featured in our quarterly P2P newsletter,
contact Meghan Mitchell meghan.janetwork@gmail.com. We would
love to tell your story!
One
Last Thing!
Have
you heard about the 2013 Juvenile Arthritis National Conference? Visit http://www.arthritis.org/resources/community-programs/juvenile-arthritis-national-conference/about/ for all the
info!!
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