SUMMER 2016 MID FLORIDA CHAPTER MS CONNECTION NEWSLETTER LIVING THE EVOLUTION Diagnosed 27 years ago at age 30, Donna Epps Garris says she has been through “the evolution of multiple sclerosis.” At the doctor’s office, she was told that there was nothing anyone could do for her. Today, she takes an oral treatment that works for her. “We didn’t have computers or Internet,” Garris remembers, “so I would go to libraries and read about MS.” One book mentioned a doctor whose words resonated with her. “He said, there is no cure, but I can make your life comfortable living with MS,” she says. “I thought, this is the doctor I want to see.” So she drove eight hours to Atlanta from her home in Barr, Mississippi, to see him. Since then, she has tried different treatments to find one that was right for her. “It’s just been tremendous,” she says. “I’ve had only one exacerbation in two years.” However, that’s not to say Garris doesn’t still face challenges, such as accessing care and support in a rural area, and with her job. As an independent sales representative, she is not covered by the Americans with Disabilities Act and has found it difficult to overcome misconceptions at work about her MS. “People with MS who work independently really are vulnerable,” she says. So she is turning her energy toward MS activism, working to support funding for MS. “I met with our local congressman last year and told him my story — how important it is to keep pushing through those funds.” Garris also eagerly follows the world of MS research. “MS affects people in many different ways, whether it’s relationships, jobs or depression, and there are many different ways to help us live a life that’s manageable,” she says. She cites “tremendous” family support and her husband, Pete, as important factors, as well. “I couldn’t do it without him. He knows exactly what to do” — things like bringing home a single rose or sending cards in the mail. “Just little things like that,” she says. “It’s not all about physical intimacy, but things that keep the romance alive.” n DONNA EPPS GARRIS WITH HER HUSBAND, PETE “I COULDN’T DO IT WITHOUT HIM. HE KNOWS EXACTLY WHAT TO DO.”
Welcome message from author
This document is posted to help you gain knowledge. Please leave a comment to let me know what you think about it! Share it to your friends and learn new things together.
Transcript
SUMMER 2016MID FLORIDA CHAPTER
MS CONNECTION NEWSLETTER LIVING THE EVOLUTIONDiagnosed 27 years ago at age 30, Donna Epps Garris says she has been through “the evolution of multiple sclerosis.” At the doctor’s office, she was told that there was nothing anyone could do for her. Today, she takes an oral treatment that works for her.
“We didn’t have computers or Internet,” Garris remembers, “so I would go to libraries and read about MS.” One book mentioned a doctor whose words resonated with her. “He said, there is no cure, but I can make your life comfortable living with MS,” she says. “I thought, this is the doctor I want to see.” So she drove eight hours to Atlanta from her home in Barr, Mississippi, to see him. Since then, she has tried different treatments to find one that was right for her. “It’s just been tremendous,” she says. “I’ve had only one exacerbation in two years.”
However, that’s not to say Garris doesn’t still face challenges, such as accessing care and support in a rural area, and with her job. As an independent sales representative, she is not covered by the Americans with Disabilities Act and has found it difficult to overcome misconceptions at work about her MS. “People with MS who work independently really are vulnerable,” she says. So she is turning her energy toward MS activism, working to support funding for MS. “I met with our local congressman last year and told him my story — how important it is to keep pushing through those funds.”
Garris also eagerly follows the world of MS research. “MS affects people in many different ways, whether it’s relationships, jobs or depression, and there are many different ways to help us live a life that’s manageable,” she says.
She cites “tremendous” family support and her husband, Pete, as important factors, as well. “I couldn’t do it without him. He knows exactly what to do” — things like bringing home a single rose or sending cards in the mail.
“Just little things like that,” she says. “It’s not all about physical intimacy, but things that keep the romance alive.” n
DONNA EPPS GARRIS WITH HER HUSBAND, PETE
“I COULDN’T DO IT WITHOUT HIM. HE KNOWS EXACTLY WHAT TO DO.”
MS CONNECTION: SUMMER 2016
CONNECT WITH US ONLINE:website: www.nationalmssociety.org/flcemail: [email protected]
www.facebook.com/nmssflcwww.twitter.com/nmssmidfloridawww.pinterest.com/nmssmflcwww.instagram.com/mssociety_midfl
Main Office2701 Maitland Center Parkway, Suite 100Maitland, FL 32751
Tampa Office4919 Memorial Highway, Suite 103Tampa, FL 336341-800-344-4867
OUR STAFFCarroll FranklinPresident
Laura ChoateDirector of Operations
Patricia ChuckPrograms & Services Manager
Linda GurianPrograms & Services Coordinator
Mary HealeyDevelopment Manager
Lisa OsborneDevelopment Administrator
Stephanie WalgamottDirector of Marketing & Special Programs
2016-2017 Calendar August 18 Free From Falls at USF begins September 18 Walk MS: Port Charlotte
October 28 25th Annual MS PRO-AM Invitational Golf Tournament November 1 Registration for Annual Meeting & Day of Discovery opens at 9 AM December 3 Annual Meeting & Day of Discovery February 4 Walk MS: Vero Beach February 25 Walk MS: Sarasota/Manatee March 3-5 Challenge Walk MS: Savannah March 11 Walk MS: Brevard & Walk MS: Volusia County at Ormond Beach March 18 Walk MS: Tampa March 25 Walk MS: Lady Lake & Walk MS: Largo April 2 Walk MS: Orlando May 6-7 Bike MS: The Citrus Tour
02
NATIONALMSSOCIETY.ORG | 1-800-344-4867 03MICHAEL SALAZAR AND HIS RIDE TO SUCCESS ON BLACK BEAUTY By Carroll Franklin
When Michael Salazar mounted his bike, Black Beauty, at Fantasy of Flight to begin his first adventure as a participant in Bike MS: The Citrus Tour, there was skepticism on the part of some of the more seasoned riders who queried whether or not this twelve year old boy would actually be able to successfully navigate the 100-mile course on day one of the event. But Michael knew otherwise. For months on end, he had trained with his father, a veteran Bike MS participant, whose encouragement spurred Michael on in spite of the pain he felt in his legs and buttocks after riding first five, then ten and eventually thirty-five miles at a time. As the miles increased, so did Michael’s confidence. What resonated most in his mind were the words of his parents who kept telling him: “You’ll get stronger. You can do it.” And do it, he did!
As a middle school student at Manatee School of the Arts, Michael focuses on disciplines that not only enhance his mind but condition his body. For Michael, music and dance are as important as mixed martial arts and kick boxing. Whether he is playing chess or ice skating, Michael’s modus-operandi is always the same – to do his best. When he grows up, Michael hopes to translate all of the experiences of his youth into an occupation – such as that of an orthopedic surgeon – in which he can help other people. At his young age, he already seems to understand the importance of giving back. His sensitivity reveals as much about his well-rounded perspective of life as much as it does about the lessons his parents, Diego and Melissa, are teaching him about how to treat others – with kindness, sympathy and respect.
On the second day of the ride, tired and sore, Michael mounted his bike at ChampionsGate, determined once again to accomplish what he promised himself he could do. While traversing the route, hot and in pain, he motivated himself through self-talk. “This pain will go away in a few days, but people who have MS will have it for the rest of their lives. I can do this for them.” The last leg of the ride was tough for Michael. Other participants, who rode past him, even Alan, the event’s oldest cyclist, encouraged him by saying; “Come on, Michael. Keep going. You’re almost there.” With his father by his side and his mother not far behind, Michael knew he was home free when he spotted the big orange arch. What a sight to behold – the Finish. As he rode through the arch, with the 2016 Bike MS medal in his hand, Michael knew he had done his best. The medal, which he took to school along with the route map, to proudly show his classmates, will forever be a symbol of success – his success in completing his first Bike MS ride. Congratulations, Michael. We’re so proud of you and your accomplishment.
03
MS CONNECTION: SUMMER 2016
RESEARCH
INVESTING IN THE FUTUREThe National Multiple Sclerosis Society has committed $25.3 million to 60 new MS research projects that hold promise toward stopping MS, restoring lost function and ending MS forever. In addition, funding for one-year grants for 11 new pilot projects will allow MS researchers to investigate high-risk, high-potential strategies to understand, treat and manage MS.
Studies that delve into genetic and environmental risk factors for MS include how vitamin D might protect individuals from developing the disease and how the influence of genes on immune cell activity might be a clue to stopping or preventing MS. Other studies are focusing on a range of strategies to stop MS progression or restore function. Following is a sampling of these promising projects.
THE WHY OF PROGRESSIVE MSDespite advances that have produced disease-modifying therapies for relapsing forms of MS, treatments for progressive MS have remained elusive.
To address that gap, the Society is supporting a large-scale study, SUMMIT (Serially Unified Multicenter Multiple Sclerosis Investigation), to leverage extensive information from long-term monitoring of more than 1,000 people with MS to understand factors that lead to progression.
The five-year study will bring together two MS Centers of Excellence, Harvard’s Brigham and Women’s Hospital and the University of California, San Francisco, to develop a database of invaluable information that will be open to researchers anywhere in the world.
Another study, led by Dr. Claudia Lucchinetti and Charles Howe, PhD, at the Mayo Clinic and Foundation in Rochester, Minnesota, will conduct “metabolic profiling” of people with MS in order to better understand the role that metabolic stress, which spans a variety of problems in cells, including energy deficits and failure to recycle unneeded proteins, may play in MS progression.
An interesting study at Washington University School of Medicine in St. Louis explores the role that sex differences may play in the transition of relapsing-remitting MS, the most common form of the disease in women, to secondary progressive MS. Researchers have found that the entry of harmful immune cells into the brain during MS is partially mediated by a molecule called S1PR2,
THE NATIONAL MS SOCIETY HAS ALSO RENEWED ITS SUPPORT OF PEDIATRIC MS RESEARCH.
04
NATIONALMSSOCIETY.ORG | 1-800-344-4867
which occurs in high levels in women with MS. Blocking S1PR2 in mice with an MS-like disease appears to improve disease severity in female, but not male, mice.
RESTORING LOSSESResearch dedicated to restoring what’s been lost in MS focuses on understanding how nerves and their protective myelin coating normally work, how we can repair those critical tissues, and how restoring function may also include new strategies to manage common issues of MS.
One study at Johns Hopkins University is focusing on a promising compound that may improve cognitive function in MS. The compound, a molecule called GCPII, was shown in mouse studies to improve cognitive performance, but only in very high doses administered via injection. Now, with the help of a drug discovery team with expertise in GCPII pharmacology, investigators are synthesizing and evaluating 20 to 30 new compounds to try to create an oral version. If they are successful, the compound could move to clinical trials to prove its safety and benefits.
Another study at St. Joseph’s Hospital and Medical Center in Phoenix hopes to follow how a type of immune cell called a Natural Killer (NK) cell interacts with brain cells, possibly interfering with the repair process. These cells have been found to remain in the brains of people of MS and in mice with an MS-like disease; eliminating NK cells in the latter was found to significantly improve their recovery.
LIVING WITH MSRestoring function may also include new lifestyle and wellness approaches. Studies focusing on these areas include an international multicenter trial of an online program to reduce MS-related depression.
While depression is a common symptom of MS, MS symptoms such as fatigue, cognitive challenges and mobility issues can make it difficult to attend in-person therapy sessions. The online program, called Deprexis, can be used in an individual’s home, eliminating the need for travel. Preliminary results have already indicated that the program may reduce depression in MS and researchers are now conducting a phase 3 trial at five MS centers in the U.S. and Germany in 400 people with MS.
Recent research has also suggested that some individuals with MS have difficulty in “emotional processing” — specifically, recognizing emotions from people’s facial expressions. A team at Kessler Foundation Research Center in West Orange, New Jersey, is examining the effects of an intervention aimed at improving emotional processing. The intervention includes interactive training and a computer program to help improve facial affect recognition.
To learn more about MS research and stay up to date on current studies, visit nationalMSsociety.org/research. n
05
06Group Name Location Meeting Time Contact
Brevard CountyEau Gallie Group
Brevard County Central Cocoa Sunday Group
Hillsborough County (South Tampa) Thursday Afternoon
Orange County (includes Seminole County) Sunday Afternoon Group
Citrus County Saturday Morning Group
Lake County Wednesday Morning Group Mighty Survivors
Orange County “Orange A.N.T.S.” Support Group
Hillsborough County (Central) Tuesday Evening Group
Marion County “Multiple Sclerosis Villages People”
4th Sunday of every month, 2 PM
2nd Sunday of every month, 2 PM
2nd Thursday of every month, Noon - 2 PM
1st Sunday of the month September through June, 2 PM
1st Saturday of every month, 11 AM
3rd Wednesday of every month, 10 AM
1st Monday of every month, 6 PM
1st Tuesday of every month, 7 PM
3rd Tuesday of every month, 10 AM
Healthfirst Gateway Center1223 Gateway Dr.Melbourne, FL 32901
Cocoa Public Library308 Forrest AvenueCocoa, FL 32922
Hyde Park United Methodist Church500 W. Platt StTampa, FL 33606
Winter Park Hospital Medical Library 200 N. Lakemont Ave Winter Park, FL
First Baptist Church3790 E. Parsons Point Rd, Hernando, FL 34442
Nat’l Training CenterSouth Lake Hospital1099 Citrus Tower Blvd.Clermont, FL 34711
Dr. Phillips HospitalAtrium Conf. Room9400 Turkey Lake RdOrlando, FL 32819
Lake Magdalene Church Heritage Hall2902 W. Fletcher AveTampa, FL 33618
La Hacienda Center1200 Avenida CentralLady Lake, FL 32159
Kevin (321) [email protected]
Kevin (321) [email protected]
Florence (813) 390-6937ffoster@tampabay ladieswithms.com
Ian King (407) [email protected]
Shana (352) [email protected]
Aimee (352) 242-2350 [email protected]
Jeff Hamilton(407) [email protected]
Rita (813) [email protected]
Mary (352)[email protected]
MS CONNECTION: SUMMER 2016
Orange County “Downtown A.N.T.S.” Support Group
32 West Gore St. 4th FloorOrlando, FL 32806
1st Friday of every month, 10 AM
Carla Sims (312) [email protected]
Flagler County MS Support Group
Flagler County Public Library2500 Palm Coast Pkwy NWPalm Coast, FL 32137
Monthly. Check with Debbie for dates and times.
Debbie (901) 409-6255 jake_logans_mom@ yahoo.com
NATIONALMSSOCIETY.ORG | 1-800-344-4867 07Group Name Location Meeting Time Contact
Pasco CountyWest Pasco MS Support Group
Osceola County “Osceola A.N.T.S.” Support Group
Pasco County South Self-Help Group
Polk County (East) Thursday Morning Group
Volusia County “Wave Riders” Support Group
Pinellas County (Central) Tuesday Evening Group
Sarasota County Thursday Noon Group
Volusia County “MSKeteers” Support Group
Pinellas County (South) Thursday Morning Group
Sarasota County “Friends of Hope”
2nd Monday of every month, 12 noon
3rd Thursday of every month, at 6 PM
Last Thursday of every month, 6 PM
3rd Thursday of every month, 10:30 AM
2nd Thursday of every month, 12:30 PM
2nd Tuesday of every month, 6:30 PM
1st Thursday of every month, 12:30- 2:30 PM
3rd Saturday of every month, 1 PM
1st Thursday of every month, 10 AM
3rd Thursday of every month, 6 PM
Trinity College of Florida 2430 Welbilt Blvd. Trinity, FL 34655
KUA 1701 Carroll St.Kissimmee, FL 34741
Florida Hospital 2nd Floor Classroom 2600 Bruce B. Downs Blvd.Wesley Chapel, FL 33544
Abiding Lutheran Church1910 Havendale Blvd. Winter Haven, FL 33881
DSIL119 S. Palmetto Ave. Daytona Beach, FL 32114
HealthSouth Rehabilitation Hospital of Largo, Classroom C901 Clearwater/Largo Rd. Largo, FL 33770
HealthSouth Rehab6400 Edgelake Dr.Sarasota, FL 34240
Deltona Public Library 2150 Eustace Ave. Deltona, FL 32738
Azalea Center1600 72nd St. N.St. Petersburg, FL 33710
Sarasota Memorial Healthfit5880 Rand Blvd. Sarasota, FL 34238
Susan (727) [email protected]
Morgan Music (724) [email protected]
Hayley Hipkins (720) 891-6855 [email protected]
Jeff (863) [email protected]
Gabrielle (386) [email protected]
Marie (727) [email protected]
Deb (941) [email protected]
Nayda (386) 789-0332Msketeers2004 @embarqmail.com
Lynn (727) 343-8034
Chris (941) [email protected]
Related Documents
