ROCKY MOUNTAIN CHAPTER NEWS
Fall 2014
What’s Happening
Eating Well Throughout the Holidays
• Special dates, times and locations
for holiday luncheons and parties for
our support groups – see Page 2.
We all cheat a little bit over the holidays but for those with
scleroderma, this can cause more problems than just a few extra added
pounds. Learn some good eating habits from the Scleroderma
Foundation’s booklet on “Eating Well With Scleroderma” available on
our website at http://bit.ly/EatingWellSF.
• Dec. 9 – Colorado Gives Day –
statewide day of online giving.
“Give Where You Live” on Colorado Gives Day
For more information, go to
www.scleroderma.org/colorado or
contact us at (303) 806-6686 or
[email protected].
The Scleroderma Foundation-Rocky Mountain Chapter will participate
again this year in Colorado Gives Day on Tuesday, December 9. This 24hour period of online giving raised over $20 million dollars last year for
more than 1,400 Colorado
charities. This year, our Board and
staff have committed to match
dollar for dollar the first $2,500
donated to the Chapter on Colorado
Gives Day! So that you don’t forget
to donate, you can pre-schedule
your donation starting on November 1 at
www.coloradogives.org/rockymntscleroderma (after you enter a
donation amount, just click on the button under Donation Type that
says “CO GIVES DAY”). This year you can also select how you would
like your donation used by selecting one of our programs – Patient
Support and Education, Awareness and Advocacy or Research. We
hope we can count on your support!
• Jan. 30, 2015 – Scleroderma Night
at the Colorado Avalanche.
Northern Colorado “Stepping Out to Cure
Scleroderma” Walk & Kids Fun Run
on Sept. 14 at Fort Collins City Park raised over
$15,000 for scleroderma! Thank you walkers,
donors, sponsors and volunteers.
Scleroderma Night at the Colorado Avalanche
We are partnering with the Colorado Avalanche again in 2015 to raise
money and awareness for scleroderma. Join us when the Av’s take on
the Nashville Predators on Friday, January 30.
You get discount tickets and the Av’s will donate a
portion of each ticket sold to the Chapter.
Stuck on what to get that sport’s fan on your list
for Christmas? Then how about some tickets to
the game? You can help us spread awareness – if we sell 50 tickets
through this program, we get to set up an information table in the
concourse at Pepsi Center on the night of the game. Imagine how
many people we could reach! For more information and to order your
tickets, go to http://www.avstix.com/scleroderma2015.
2014 National Conference Workshop Videos
Many workshops at the 2014 National Patient Education Conference in
Anaheim, CA in July were recorded and are available to view at
https://www.youtube.com/user/sclerodermaus.
INSIDE THIS ISSUE:
Support Groups
2
Board Update
2
Ricki’s Story
3
Contact Us
4
Board Update
The most valuable service the Rocky Mountain Chapter
provides is the support groups. I appreciate the leaders of
all the support groups and I’d like to take a moment to thank
them.
Rita Miller has been the Board liaison for all the support
groups and I appreciate this very much. Thanks to Sandee
Maas for initially heading up the Denver support group.
She will be the Board liaison in 2015. Judy Laible and Dick
Nelson have done a great job putting the Northern Colorado
program together. Thanks to Garnet Hoover for continuing to
build our Western Slope group, despite distance issues and
getting presenters. Finally, Linda Conopask has worked so hard
with our Southern Colorado support group, finding locations
and presenters. Due to some health issues, Linda is taking a
break. Thanks Linda for all you have done.
The support group leaders coordinate the meetings including
presenters, equipment needed and food. Thanks to all who help
in those areas too.
And finally, thank you to Cyndy for all of the backroom support,
marketing, sending out notices and more, for all four groups.
Our goals for these meetings are multiple. A few are to motivate
others to improve their lives, to learn about the disease and
treatments, to support others (both patients and caregivers) and
to promote togetherness within the group.
I appreciate everyone’s contribution to growing the groups and
making them stronger.
John Niemi
Chapter President
303-947-4184
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
November 8 – View and discuss video of Dr. Carol Feghali-Bostwick’s opening keynote presentation on her research from the
2014 National Patient Education Conference.
December 13 – Holiday party – join us for some holiday treats and lots of fun.
January 10, 2015 – Presentation on “Patient and Caregiver-Pulmonary Hypertension”. Sponsored by United Therapeutics.
February 14, 2015 – A demonstration in tai chi (Part 1) by Maria T. Lopez.
March 14, 2015 – Demonstrations in tai chi (Part 2) by Maria T. Lopez and M.E.L.T. by Juan Flores, Certified Instructor.
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
November 15 – View and discuss video of Dr. Carol Feghali-Bostwick’s opening keynote presentation on her research from the
2014 National Patient Education Conference.
December 6 – Holiday luncheon starting at 11:30 am at the Edelweiss Restaurant, 34 E. Ramona Ave., Colorado Springs, CO
80905. (NOTE: Special date, time and location for the holiday luncheon. No meeting will be held on December 20.)
January 17, 2015 – Vicki Emch, a Clinical Dietitian, will discuss diet and scleroderma.
March 21, 2015 – To be announced.
Meetings are held monthly from 11:00 am – 1:00 pm at Penrose Cancer Center, Room CC-A, 2222 N. Nevada Ave., Colorado
Springs, CO 80907. NOTE: Meetings will held in only odd numbered months starting in January 2015.
NORTHERN COLORADO SUPPORT GROUP
December 6 – Holiday luncheon starting at 11:00 am at the Moot House, 2626 S. College Ave., Fort Collins, CO 80525. (NOTE:
Special date, time and location for the holiday luncheon. No meeting will be held on December 27.)
February 28, 2015 – Dr. Michael Thakor, a rheumatologist with The Arthritis & Rheumatology Center of Northern Colorado, will
present information on the different types of scleroderma and discuss treatment options.
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
November 8 – Pre-holiday party and update on the 2014 National Patient Education Conference workshops by this year’s
Chapter attendees.
January 10, 2015 – Presentation on acupuncture by Healing Horizons Integrated Health Solutions (tentative).
March 14, 2015 – Kevin Fischer, a Cardio-Pulmonary Physician Assistant will present on interstitial lung disease.
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.
Ricki Douglas Is An Active Mom Who
Happens to Have Scleroderma – Here is
Her Story
Ricki Douglas was born and raised in Wyoming. She moved
to Colorado to start nursing school after high school. Ricki is
a registered nurse and has worked in geriatrics at Prairie
Creeks Living Center for 16 years. Ricki has been married to
Bob for 10 years whom she met on a blind date set up
through a mutual friend. Bob is an aircraft mechanic for
Straight Flight, Inc., a company owned by Sierra Nevada
Corporation, and works on major repairs and body
modifications for civilian and military aircraft. They live in
Strasburg, Colorado with their 3 kids – Tate, 14, Matilyn, 12
and Evanne, 8 – 2 dogs, 2 cats and a bird. As a family, they
enjoy hiking, camping, traveling and watching the two oldest
kids participate in cross country running.
In her early 20’s, Ricki raced sled dogs as a musher. She
developed Raynauds and got ulcers on her fingers but kept
on racing until she had her kids. Then in 2010 she
experienced extreme fatigue. She went to a rheumatologist
who told her she had a high rheumatoid factor but otherwise
nothing conclusive. Ricki got frustrated and tried to manage
her symptoms by herself. In 2013 she had some tests done
at University of Colorado Hospital and was referred to Dr.
Jason Kolfenbach.
Ricki (left) with her family
scleroderma. They are interested, supportive and help out.
Her youngest doesn’t fully understand the disease but knows
to let Ricki get her rest when she needs it.
Ricki feels that her diagnosis has been hardest on her mother.
Yet she is very supportive and goes to all of Ricki’s doctors’
appointments with her. Also usually in tow are Bob and her
father as well. Ricki finds this is a big help because she cannot
always answer the doctors’ questions, such as are you more or
less short of breath, but those around her sometimes can.
They also help absorb more of the doctors’ comments to share
with Ricki later.
Ricki’s type of scleroderma was not initially identifiable. At
first she was diagnosed with sine scleroderma because she
only had a small patch of skin involvement. She has since
been diagnosed with limited scleroderma (skin involvement
only below the elbows and knees but may involve the
internal organs). Since being diagnosed Ricki has had two
pulmonary function tests that fortunately have shown little
change to her lungs. She had increased shortness of breath
this summer but she has also been diagnosed with anemia
and iron shortage which may be contributing to that.
Ricki has changed her diet and is eating better since being
diagnosed with scleroderma. This means her family is now
eating healthier too. Because Ricki prepares the meals,
everybody eats what she cooks!
Ricki admits that her endurance has changed with
scleroderma. She can’t run 5K races anymore and can’t hike
as much. She also gets more tired chasing after the kids.
This can be frustrating because she has an active family.
Ricki has relied on the Scleroderma Foundation and the Rocky
Mountain Chapter for a lot of what she has learned about
scleroderma. Because of her work schedule she can’t make it
to many support group meetings but she does attend the
Chapter’s annual Patient Education Day. This year, she and
Bob traveled to Anaheim, CA to attend the National Patient
Education Conference that Ricki thought was an amazing
experience. Tips on doctors and specialists from the Chapter
has also been very useful information to her.
She has had to cut back on some of her other hobbies too.
Ricki likes to garden (and actually completed the Master
Gardener Program through CSU Extension). Gardening has
become difficult for her because it is uncomfortable digging
in the dirt with her hands.
Another one of Ricki’s interesting hobbies is as a beekeeper.
She still has her hives but she now has to have Bob help her
lift the boxes of honey because, at 60 pounds each, she can
no longer lift them herself. (Her son was in a documentary
earlier this year about bees called “Bee People” that is
available at Whole Foods!)
Ricki’s recommendation to someone newly diagnosed with
scleroderma is to get as much information as possible by
attending support group meetings and educational events.
Ricki also recommends finding a specialist who knows about
scleroderma and educating yourself on what to expect.
Ricki wants to continue doing all she can do and hopes to
someday be able to run a 5K again. She values the time she
gets to spend with her family. She is a big believer in what she
can do now (she has replaced running with yoga which is great
for breathing and flexibility – she recommends it for anyone
with scleroderma!) Her goal is to keep being a “normal”
person as a working mom and hiking and camping.
Ricki is adjusting to what she can and cannot do anymore. It NOTE: Earlier this year, Ricki was interviewed by Channel 3
is also an adjustment for the entire family. Her kids are bright CNTV’s Gary Atencio about scleroderma. You can view this
and have done a lot of their own research about
interview at https://www.youtube.com/watch?v=rrJAdoG9vIg.
Rocky Mountain Chapter
___________________
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.
Year End Giving Opportunities
How To Donate
Combined Federal Campaign (CFC)
The Combined Federal Campaign is an annual fundraising drive conducted
by federal employees in their workplace each fall. Federal employees and
military personnel raise millions of dollars each year through the CFC to
benefit thousands of nonprofit charities. The Scleroderma Foundation is
the recipient of funds from many CFC organizations throughout the
country. To select the Scleroderma Foundation, use CFC code No. 10089.
1.
AmazonSmile
AmazonSmile is a simple and automatic way for you to support the
Scleroderma Foundation every time you shop for the holidays (and
throughout the year). Simply go to www.smile.amazon.com to get
started. You can use the same account you already have on Amazon.
Each time you make a purchase through AmazonSmile, Amazon will
donate 0.5% of your purchase price to the charity you selected.
3.
Contact Us At…
Follow Us At…
5.
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
2.
4.
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.
Take part in Colorado Gives Day! (See
page 1.)
The Scleroderma Foundation is a