2015 Newsletter FINAL.pub

GEORGIA
SEPTEMBER 2015
IT’S BEEN AWHILE
Special points of
interest:
• It’s Been Awhile
• Why Golf?
• What’s News with
Shoes
• Mind & Body Workshop
• How to Become and
SFGA member
Inside this issue:
SFGA
Year -To-Date
2
2015 National
Patient
Conference
5
SFGA
Still - To - Come
6
SFGA
Support Group
8
SFGA
The Rest of 2015
8
We know it’s been a while since we’ve sent out our Newsletter to you but rest
assured it’s not that we haven’t wanted to its just that we’ve been so busy.
To learn what we’ve been up to and how SFGA (The Scleroderma Foundation
Georgia Chapter) has been MAKING A DIFFERENCE here in Georgia and to
scleroderma patients and their families please read on. This newsletter will
hopefully bring you up to date as well as let you know what’s next for SFGA
and hopefully YOU!!
WHY GOLF?
“Why not?” is what Bill Basile said when his family was
planning a day of fundraising to Support The National
Scleroderma Foundation. Bill and his family lost his sister
Kathleen Basile in 2009 after her battle with scleroderma.
His siblings were planning a fundraising event to include a
dinner, raffles, and live entertainment but Bill didn't think
he could do much to help there so he wanted to do a
golf
tournament too!
Thus the “Kathleen Basile
Memorial Golf Tournament” came to be.
Bill has always loved to play golf and has played in many
tournaments but did he know enough to pull it off?
On Friday, October 2, 2015 @ Reunion Country Club in Houshton GA he will
be hosting the 7th Annual Kathleen Basile Memorial Golf Tournament so
what he didn't know he’s certainly has figured out. How does Bill make it
happen year after year? Through hard work, many phone calls, and emails to
friends, family, and work colleagues. It’s not easy reaching out to people to ask
for donations, sponsorships, taking time off work to come play a round, but Bill
continues to be committed to the mission of SFGA to offer patients SUPPORT
and EDUCATION on their disease and to help fund the much needed
RESEARCH so others hopefully don’t have to go through what his sister did.
(cont. pg. 7)
Page 1
SFGA MAKING A DIFFERENCE THROUGH EDUCATION
On a beautiful Spring Sunday we gathered at Emory University to hear from two of their own. Dr. Heather Gladue
(SFGA Medical Advisory Board Member) and Dr. Srihari Veeraraghavan, (AKA Dr. “V”). They shared a message of HOPE to
all in attendance. They shared information regarding ongoing research on advancing therapies and care for scleroderma
patients. Dr. “V “ spoke in depth about interstitial lung disease and the development of new drug treatments to not
only stop it but in some cases reverse it. Then both he and Dr. Gladue offered to do Q & A with the attendees which
also added to the informative event. Dr. Gladue has just recently taken a position in North Carolina, the SFGA Board is
very sad to see her go but wants to thank her and wish her all the best.
WHAT’S NEWS WITH SHOES
Breaking A Guinness Book
of World Records
You may have seen this story in the “Voice”
magazine but we just wanted to let you know how
SFGA helped Lucille break this record too.
Lucille Miller lives with Scleroderma
everyday but she doesn't let that keep her
from breaking records. She along with her
family, friends, Friedman’s Shoes, the Atlanta Lucille pictured with some SFGA
Somebody got creative does this
Hawks and SFGA volunteers set out to team members that helped get
shape made completely of shoes
those 1,712 shoes autographed
look like any state we all know!
break a Guinness Book of World Records
for the largest collection of autographed WOW! Freidman’s Shoes really does make
shoes. It wasn’t as easy as it sounds. The specialty shoes! Shaq O'Neill autographed his shoe
and added to Lucille’s collection.
group had to approach people attending the
A seldom seen picture
Hawks game that same night and ask them
of our SFGA Photographer
to take a minute to sign a shoe. Talk about
Carla Basile pictured here
an Scleroderma Awareness Event.
autographing a shoe. You
The previous record of 1,501 shoes has
can tell she didn't take this picture, because it’s
not up to her usual standards. Note: quality of picbeen crushed by the now 1,712
ture. We’d also like to just give a shout out to her
autographed shoes in Lucille’s shoe
and say “THANKS” for all her GREAT pictures
collection.
that we get to share with you.
Page 2
HIKING AND HOTCAKES 2015 NOT JUST A FUNDRAISER
Just like our logo said “Running for Research” and that is just what we did.
We raised $25,000 that went directly to the National Scleroderma Foundation
for continued research in the hopes of one day finding a cure for scleroderma.
The day was GREAT and many hands made the job an easier one for sure.
BIG THANKS YOU TO:
• ALL OF THE TEAMS & INDIVIDUAL PARTICIPANTS
• SFGA Board Members and Volunteers
• Cara Sullivan and the Parkview Cross Country Team and
Booster Club parents
• Our Zumba Friends
• May Bongcaron for securing so many great donations
CORPORATE SPONSORS:
• Actelion Pharmaceuticals & Bayer
• Sports Medicine South
• Kroger
• Law Office of J. Michael Levengood
• Emory Healthcare
(Please see pg.4 for a look at our event sponsor board and more!)
As we already stated the event was a huge success but we also want to tell you
about how you just never know what is going to happen when you are in the
right place at the right time for people.
The “Hiking” was finished and people were gathering under the Lilburn City
Park pavilion to enjoy some “Hotcakes” thanks to the Knights of Columbus
Council #7923 when a gentleman walked up to some Board Members and said
Peggy Levengood (Event Chairperson)
that he walked at this park frequently and saw all of our signage and wanted to
and her husband Mike accepting the
learn more about our group. He then proceeded to tell of his wife who has
award for TOP FUNDRAISING TEAM
been battling with Scleroderma and is overwhelmed and feeling hopeless and
helpless. We welcomed him and made sure he got some information about
Support Groups, and several pamphlets that always make sure we have
available at all our events. The look on his face said it all. It was a look of hope
for his wife. He didn't stay long but we all new that SFGA had just
“MADE A DIFFERENCE” in this man’s life and hopefully his wife’s as well.
Then another gentleman walked up and said that he worked with Bill Basile
(Golf Tournament Coordinator) for years and Bill was sharing with work colleagues
about “Hiking and Hotcakes” he shared his sister’s story and the gentleman
shared with Bill that he had just lost his mother-in-law to the disease. He
wished she would have found our group, and he and his wife now would like to
help anyway they can.
May Bongcaron (Newest SFGA Board
Member and event Co-Chair) with her
family who also placed in TOP
FUNDRAISING TEAMS. Special thanks
to May’s Daughter Mackenna (seen
here 2nd from right) for starting off our
event with the “Star Spangled Banner”
We are always amazed about how we seem to be in the right place at the right
time for so many who are in need or ready to help the cause. So we
encourage our members to share their stories because you never know what
you share might help someone else.
HIKING AND HOTCAKES 2016 is already in the planning stages look
for more details soon!
Page 3
SOMETIMES A PICTURE IS REALLY WORTH 1,000 WORD
HIKING & HOTCAKES 2015
Page 4
EATING FOR FUNDRAISING IS A
VERY GOOD & TASTY DEAL
Chipotle - Snellville let SFGA and friends
make dinner “COUNT” on Monday, June 29,
2015 between 4:30pm and 8:30pm. Anyone that
purchased food and said they were there to
support the Georgia Chapter of the
Scleroderma Foundation helped raised almost
$500 for the Chapter’s many endeavors.
Chipotle donated 50% of all proceeds and we
thank them for their generous support.
CHIPOTLE - SNELLVILLE, GA
JUNE 29 2015
So if your hungry while you’re reading this
newsletter think about Chipotle for lunch or
dinner you won’t be disappointed.
SFGA BEING NEIGHBORLY (2015 - National Patient Conference)
Many Support Group Members and SFGA Board made their
way to our neighbors to the North in Nashville TN in July
2015 for 17th Annual Scleroderma Foundation
National Patient Conference. We were welcomed by the
Nashville Board on Thursday evening, attended the
Leadership Day events on Friday, and then attended the
Patient Conference both Saturday and Sunday. National did
another GREAT job this year securing very informative
speakers which included members from our SFGA’s Medical
Advisory Board Dr. Murtaza Cassoobhoy and his wife Arefa
Cassoobhoy MD, MPH
If you were not able to attend the conference many of the
speakers were videoed. The National page has many links
to these videos available so you can learn more about
“What’s New” and “What’s Coming” in scleroderma
therapies and treatments. Visit www.youtube.com/user/
SclerodermaUS
The 18th Annual Scleroderma Foundation National
Patient Conference will be in New Orleans Louisiana
July 29 – 31, 2016
Even family members of SFGA’s Board helped assist attendees
with limited mobility making sure they were able to attended the
informative sessions.
BECOME A MEMBER
TODAY!
To become a member of SFGA by going to
the National Foundation donation page at
www.scleroderma.org Your donation will be
directed back to the chapter level to help us help
the people living with scleroderma here in
Georgia, by allowing us to continue to host
patient education events, support and create
new Support Groups, and continue to make
contributions to aid the much needed research
to find a better treatment and ultimately a cure!
Page 5
SAVE THE DATE
Page 6
SAVE THE DATE FOR
ANOTHER GREAT SFGA EVENT
Why Golf? (cont. page 1)
The day is one of great golf, prizes, raffles and
some wonderful food. This year the event is
themed for a College Game Day Rematch
UGA vs. BAMA. Bill has come up with
several ways that you can help:
•
SPONSORSHIPS
•
GOLF HOLE SPONSORS
•
RAFFLE PRIZES
AND SOMETHING NEW THIS YEAR
If you can’t make the event, or don’t play golf
but want to make a donation you can become a
“ P HAN T OM
G OLFE R ”
How it works is when you sign up to be a
“PHANTOM GOLFER” your name gets randomly
assigned to one of the 7th Annual Kathleen
Basile Memorial Golf Tournament golfers.
After the scores are tallied if your golfer is on
the team that places either 1st, 2nd, or 3rd
You’re a WINNER TOO!
Bill is also asking for MORE GOLFERS so make
plans to attend, tell your friends, and share it on
Facebook, He is hoping for 100 golfers and if
you can’t make it 100 “PHANTOM GOLFER” too!
visit www.scleroderma.org/golf2015
For more detail on the event and to sign up.
Walkups are also welcome the day of the event.
No Team! No Worry!
Bill creates teams on event day if needed!
BILL’S SISTER KATHLEEN BASILE
GOLD SPONSOR - $1,000.00
•
•
•
•
8 golfers
(includes greens fees, breakfast, lunch and carts)
Announced as primary sponsor during event
kick-off and event awards
Website Sponsorship
Golf Hole Sponsor
SILVER SPONSOR - $750.00
•
•
•
4 golfers
(includes greens fees, breakfast, lunch and carts)
Award Reception Sponsor
Golf Hole Sponsor
HOLE SPONSOR - $200.00
FOURSOMES - $450.00
INDIVIDUAL GOLFER - $125.00
“PHANTOM GOLFER” -
$25.00
Event Schedule
9:00a.m. - Registration and
Light Breakfast
9:30a.m. - Putting Contest
10:00a.m. - Shot Gun Start
3:00p.m. - Appreciation
Reception and Awards
Page 7
SUPPORT GROUP
SPOTLIGHT
SAVANNAH
SUPPORT
GROUP
Just like the back of Robin Edwards
(Savannah Area Support Team
STAY WARM - STAY WELL
We know how important it is for scleroderma patients
to keep yourself warm especially your hands. here are
some ways you might not of thought of yet.
•
TURN ON THE CEILING FAN. Warm air rises to
the ceiling. Run your fan on its lowest setting in a
clockwise direction to push the warm air back
down to where you can feel it.
•
SWITCH BETWEEN HOT AND COLD WATER IN
THE SHOWER. Hot showers immediately warm you
up, but cold showers improve blood circulation
between your skin and organs. Cold showers are
also correlated with a stronger immune system.
•
WEAR A HAT & SCARF EVEN IF YOU’RE INSIDE!
You loose heat from any surface that's exposed. So
put on your hat wearing even a light weight scarf can
keep both your neck and if long enough you can
wrap your hands in the ends of the scarf too to keep
the chill away.
Leader)
t-shirt
says she knows a lot about
scleroderma and she shares what
she know with the Savannah Area
Support Group that meet EVERY
month at Lovezzola’s Pizza in West Pooler GA. We
want to thank her for her service and wish her
continued success. So if you live in this area of Georgia
make plans to attend the Group on Sunday, September
25th. FYI the Pizza is GREAT too! For more info on
ALL Groups visit www.scleroderma.org/georgia
ATHENS
SUPPORT
GROUP
Recent Graduate of UGA Dejuana
Ford is not only SFGA’s Board
Secretary, she also is the Athen’s
Support Group Leader. Dejuana
has worked very hard to develop
the group which will be taking a
hiatus for the remainder of 2015 so
that she can
promote more awareness about
scleroderma through blogging and social media. Look
for more info on our web page at
www.scleroderma.org/georgia
THE REST OF 2015
•
Sun., Sept. 20, 2015 - Newnan Support Group Meeting
•
Sun., Sept. 27, 2015 - Mind Body Workshop
•
Sun., Sept. 27, 2015 - Savannah Area Support Group Meeting
•
Fri., Oct. 2, 2015 - Golf Tournament
•
Sun., Oct. 25, 2015 - Savannah Area Support Group Meeting
•
Wed., Oct. 28, 2015 - Atlanta Area Support Group Meeting
•
Sun., Nov. 29, 2015 - Savannah Area Support Group Meeting
•
Early Dec. - SFGA’s Annual Holiday Luncheon
•
Wed., Dec. 16, 2015 - Atlanta Area Support Group Meeting
*Date may be subject to change
WHAT’S ON MARY’S MENU
Many of you have been able to join SFGA for many of
our Holiday luncheons where Board Member Mary
Wetherington (Ms. Hospitality) has delighted our taste buds
with her delicious “Holiday Chicken”. Many have asked
for the recipe so we wanted to include it here in the
Newsletter for you. With the Holidays fast approaching
this dish is simple, tasty, and a real crowd pleaser.
“Holiday Chicken”
6 boneless, skinless chicken breast
6 slices Swiss cheese
1 can cream of chicken soup
1/4 cup milk
2 cups Pepperidge Farm (herb seasoning) stuffing mix or
a box of Stovetop cornbread stuffing works too
1/4 cup butter or margarine
Lightly grease 9X13 baking dish. Place chicken breast in
dish; top with Swiss cheese. Mix soup and milk; spoon
over chicken. Mix melted butter and stuffing mix and put
that over swiss cheese. Cover with foil. Bake 50 minutes
at 350° and ENJOY!
Page 8