rocky mountain chapter news

ROCKY MOUNTAIN CHAPTER NEWS
Summer 2014
What’s Happening
Update on Promising Research At MSU
In our last newsletter we reported on exciting scleroderma research
being done at Michigan State University. This news received so much
publicity that researchers recently published an update with more
specifics. Read more at http://bit.ly/MSUUpdate.
Northern Colorado “Stepping Out to Cure
Scleroderma” Walk & Kids Fun Run on Sept. 14
Come “step out” with us on Sunday, September 14 at Fort Collins City
Park for our 4th Annual Northern Colorado Stepping Out to Cure
Scleroderma Walk. We’ve added a Kids’ Fun Run this
year as well as entertainment by Cabin of Love and
auctioneer Brian Bean. You will also be able to
enjoy a yoga stretch before you walk and massages
after you are done.
As usual, we’ll have some great auction items, Mardi Gras beads to
reward you for each lap around the lake, and lots of food.
Register online today at www.scleroderma.org/steppingoutftcollins.
Record Results at June “Stepping Out” Walk!
A record 430 walkers “stepped out” on June 21
at Cherry Creek State Park for our 10th Anniversary
Walk and raised over $45,000 for scleroderma!
• Aug. 3 – Painting For A Cause at
Sipping-N-Painting, Hampden Ave.
Space is limited. Register online at
http://bit.ly/SipNPaintSF.
• Aug. 9 – Tennis Charity Mixer at
Gates Tennis Center, Denver.
Register online at
http://bit.ly/SFTennisMixer.
• Sept. 14 – 4th Annual Northern
Colorado Stepping Out to Cure
Scleroderma Walk at Fort Collins City
Park. Register online at
www.scleroderma.org/steppingoutft
collins. Registration forms will be
mailed in early August.
• Oct. 19 – Patient Education Day at
National Jewish Health. Registration
will be available in mid-August.
For more information, go to
www.scleroderma.org/colorado or
contact us at (303) 806-6686 or
[email protected].
Scleroderma Day at Mojo’s Frozen Yogurt
Shop in Grand Junction on July 11 raised $100
for scleroderma! Thanks Larry!
Walkers were kept entertained by emcee Don
D’Angelo, comedian Sam Adams, DJ Tim Dahlen,
the Denver Balloon Guy and Miss Colorado USA.
Thanks to our Walk committee, volunteers, walkers,
sponsors, and donors for making this event such a huge success. A
special thanks to Walk committee chair Theresa Rice whose hard work
made it all come together!
Project Scleroderma: Beneath The Surface
Project Scleroderma’s mission is to raise the global level of scleroderma
awareness and to encourage support of scleroderma research.
Narrated by Bob Saget, Project Scleroderma: Beneath The Surface is a
film that documents the grass-roots mission of a young woman from
Philadelphia working to raise awareness for the disease that took her
mother’s life. Learn more at www.projectscleroderma.com or
www.facebook.com/ProjectScleroderma.
INSIDE THIS ISSUE:
Support Groups
2
Board Update
2
Geri’s Story
3
Contact Us
4
Board Update
Well, we are halfway though summer and we have
accomplished a lot. Thanks to the many volunteers, our Walk
was a record breaker, both in number of participants and
amount of money raised. Thanks to everyone. We have made
great strides in our awareness challenge with tapings on KUSA
Channel 9 News and CNTV Channel 3.
be interested or know someone who might be interested. Ask
at your church or temple, organizations you belong to or in
your neighborhood.
When you talk to people, explain the disease and the Chapter.
We provide Board training. If someone has interest, let me
know so I can meet with them. For every candidate you bring to
me, I will give you a $25 King Soopers gift card.
At the end of this year, two of our Board members are going
to retire from the Board. Rita Miller and Phyllis Johnson have Thanks for your help and enjoy the rest of your summer!
been great volunteers beyond the Board and I thank them for
all they have done. I hope they continue to be active in the
John Niemi
Chapter. I need help finding new Board members. I’d like to
Chapter President
bring four new Board members on by year end 2014. I’d like a
303-947-4184
marketing person, someone with ties to the media, a business
owner and an attorney. Help me by asking people if they would
Support Group News
Support groups offer a friendly forum to meet others in your area living with scleroderma. Patients, caregivers, family and
friends are all welcome. For more information, visit our website at http://bit.ly/COSupport. Generally, all meetings will include
introductions and time for open discussion on topics/questions related to scleroderma. Refreshments will be provided.
MILE HIGH (DENVER) SUPPORT GROUP
August 9 – Update on the National Patient Education Conference workshops by this year’s Chapter attendees.
September 13 – Maria Theresa Lopez, Attorney, will present on estate planning and end of life issues.
October 11 – Open discussion; “meet and greet” with fellow members.
November 8 – To be announced.
December 13 – Holiday party.
Meetings are held monthly from 11:00 am - 1:00 pm at the Arthritis Foundation, 2280 S. Albion St., Denver, CO 80222.
SOUTHERN COLORADO SUPPORT GROUP
August 16 - Update on the National Patient Education Conference workshops by this year’s Chapter attendees.
September 20 – Dr. Kristin Kilbourn, MPH, PhD, will discuss the psychological and emotional aspects of living with a chronic
illness.
October 18 – To be announced.
November 15 – To be announced.
December – Holiday party – date and location to be announced.
Meetings are held monthly from 11:00 am – 1:00 pm at Penrose Cancer Center, Room CCA, 2222 N. Nevada Ave., Colorado
Springs, CO 80907.
NORTHERN COLORADO SUPPORT GROUP
August 23 – Update on the National Patient Education Conference workshops by this year’s Chapter attendees. (Following this
meeting we will prepare the goody bags and auction baskets for the Northern Colorado Stepping Out Walk – see page 4.)
October 25 – Jackie Adolph, a certified biofeedback specialist and neurotherapist, will present on biofeedback techniques used to
reduce stress and pain.
December – Holiday party – date and location to be announced.
Meetings are held in even numbered months from 10:00 am – 12:00 pm at the Medical Center of the Rockies, Poudre Canyon
Room, 2500 Rocky Mountain Ave., Loveland, CO 80538.
WESTERN SLOPE (GRAND JUNCTION) SUPPORT GROUP
September 13 – Kevin Fischer, a Cardio-Pulmonary Physician Assistant with Philips Healthcare, will present on heart and lung
involvement in scleroderma.
November 8 – Pre-holiday party and update on the National Patient Education Conference workshops by this year’s Chapter
attendees.
Meetings are held in odd numbered months from 12:00 – 2:00 pm at Alpine Bank (Conference Room, 2nd Floor), 225 N. 5th St.,
Grand Junction, CO 81501.
For Geri Thompson, Autoimmune Diseases
Run in The Family – Here is Her Story
Geri Thompson was born in Nebraska and moved to
Colorado with her family when she was 11 years old. She is
the 3rd of four children with 2 older sisters and a younger
brother. Geri is married and has a son Keegan who enjoys
lacrosse and playing the bass clarinet. He will be a
sophomore this year and just got his driver’s permit. Geri
works as a team leader in Admissions at Poudre Valley
Hospital. Her husband is a production worker in the print
shop at CSU.
Geri’s mother was a nurse. Geri and her siblings also all work
in health care, an interesting fact given that all of them have
different autoimmune diseases.
Geri’s younger brother Eric was the first. At age 9 he was
diagnosed with lupus. This was very unusual given his age
and gender. Today Eric is in remission but more than 30
years ago when he was diagnosed not much was known
about lupus and the disease affected the whole family
because they did not know if he would survive. It was hard
to see her younger brother on medications and always so
stiff. Eric was also diagnosed with rheumatoid arthritis (RA)
at age 39. Doctors refer to his condition as RUPUS (RA
overlap with lupus).
2nd oldest sister Tami started developing symptoms in junior
high school. She has Sjogren’s syndrome and Hashimoto’s
disease, which are both autoimmune diseases. She also has
Stevens-Johnson syndrome – a rare, serious disorder of the
skin and membranes caused by a reaction to medications
which begins with flu-like symptoms followed by a painful
rash that spreads and blisters, similar to severe sunburn.
Tami also has a daughter with juvenile arthritis.
Oldest sister Cherry has Graves’ disease and was diagnosed
with RA shortly after Geri was diagnosed with scleroderma.
Cherry takes Methotrexate which controls her RA. Both she
and Tami are doing well today.
Geri was diagnosed with limited systemic scleroderma in
June 2012. At the time she thought she had carpal tunnel
syndrome because of her work. However, her primary care
physician thought her lab work looked strange and sent her
to a rheumatologist right away. She was diagnosed within 6
weeks. Once Geri learned more about the disease she
suspects that she has had scleroderma longer because about
4 years ago she started developing some gastrointestinal
symptoms and colitis.
Also in 2012 when Geri was diagnosed, we experienced
many wide fires in Colorado. Geri felt short of breath but she
attributed it to the smoke; however, lung tests indicated she
had scleroderma.
Geri sees Dr. Michael Thakor in Fort Collins and Dr. Jason
Kolfenbach at University of Colorado Hospital in Aurora. She
is happy with how the two doctors work together to treat
her. She has been on CellCept for over a year and her lungs
are improving. However,
lately she has noticed more
trouble with swallowing.
She finds it hard to keep
weight on because she just
isn’t hungry enough to eat.
With so much autoimmune
disease in her family, Geri
has had many conversations
with her siblings about the
triggers for these diseases
and whether it is genes or
the environment that plays
a bigger role. Geri lost both her parents to cancer but neither
had an autoimmune disease as far as she knows. Her father
also suffered from Parkinson’s disease. Maybe the stress of
losing both parents within a year of each other early in this
decade played a factor for Geri. Her father grew up on a farm
in Iowa where they all spent lots of time when Geri and her
brother and sisters were growing up. Perhaps it was the
exposure to pesticides or something in the water there.
Geri admits that scleroderma has slowed her down even
though she still works full time. It has made her realize what is
really important, and that is her family. She used to put work
ahead of family but now puts her family first. She really enjoys
her job but realizes that she probably won’t be working until
she is 70 and has to weigh the consequences of accepting a
promotion if it means more work and more travel. She wants
to be “Super Mom” but has to rely on her husband and son to
help with the laundry and in the kitchen. This sometimes
makes her feel guilty but feels it is also teaching her son to be
more thoughtful of others. It makes him look outside himself
and recognize when others need help. She is more fatigued
and gets frustrated that she can no longer go on a 5 mile hike
(but she can still go for 1 mile!). Working in a hospital also
reminds her that she is still better off than many others.
Geri would advise anyone newly diagnosed with scleroderma
to start a medical journal – write down tests and the dates.
Keep it in a notebook so you can take it to all your specialists.
Learn from those with scleroderma either on online chat
rooms or at support groups. Don’t close yourself off from your
family and friends. Share with them what is going on with you
and don’t pretend you are okay. Arm yourself with as much
information as you can about the disease. And finally,
advocate for yourself. Don‘t settle with a doctor until you are
comfortable he or she is the one for you.
In her spare time Geri likes to read, hike with her dog (but not
as far as she used to hike), spend time with her family before
her son goes off to college and take short trips around
Colorado exploring all there is to do and see so close to home.
Geri has enjoyed getting to know others with scleroderma at
support group meetings and appreciates all that the
Scleroderma Foundation does to raise awareness and fund
research. Geri plans to be a part of the Chapter’s 4th annual
Northern Colorado Stepping Out Walk on September 14 at
Fort Collins City Park. She wants to walk and volunteer with
her family.
___________________
2280 S. Albion St. · Denver, CO 80222
The Scleroderma Foundation-Rocky Mountain Chapter thanks Rising Graphics + Printing of Evergreen
for their assistance with producing our quarterly newsletter.
Using King Soopers Gift Cards Benefits Chapter
How To Donate
Under the King Soopers Neighborhood Rewards Program, every time you
reload your card, the Chapter receives a donation of 5% of the amount.
Would you like to participate? Just contact the Chapter for a card.
1.
Get Involved
2.
We are always looking for volunteers! Join us as we plan and prepare for
our “Stepping Out” Walks:
• Tuesday, Aug. 19, 5:30 pm – 2014 Walk recap meeting to discuss what
worked /what didn’t at our June Walk and start planning for 2015 at the
Arthritis Foundation building, 2280 S. Albion St., Denver, CO 80222.
• Saturday, Aug. 23, 12:00 pm – Help us stuff our Northern Colorado Walk
goody bags and put together our auction baskets at Medical Center of the
Rockies, Poudre Canyon Room, 2500 Rocky Mtn Ave., Loveland CO 80538.
Contact Us At…
Follow Us At…
Scleroderma Foundation
Rocky Mountain Chapter
2280 South Albion St.
Denver, CO 80222
(303) 806-6686
[email protected]
www.facebook.com/COScleroderma
www.twitter.com/SclerodermaCO
Or Meet Others At…
www.inspire.com/groups/
scleroderma-foundation
3.
4.
5.
Mail your check payable to the
Scleroderma Foundation-Rocky Mountain
Chapter to 2280 S. Albion St., Denver, CO
80222.
Donate on-line through the Scleroderma
Foundation at www.scleroderma.org.
You can also learn on our website about
donating your cars and used cell phones.
Check with your employer about payroll
deductions for donations to the
Scleroderma Foundation-Rocky Mountain
Chapter (and ask them about their
matching programs).
Create a legacy by planned giving or
remembering us in your will. Get started
at http://bit.ly/SFGiftPlan.
“Step Out to Cure Scleroderma” with us
on September 14 in Fort Collins! (See
page 1.)
The Scleroderma Foundation is a