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Quarterly Newsletter of The Als Association Florida Chapter

JUNE 2009

Major and Minor League Baseball Swinging for the Fences to Knock out ALS

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3242 Parkside Center Circle Tampa, FL 33619-0907 888-257-1717 www.ALSAFL.org

Board of Trustees James Moroney Chairman David L. Smith Past Chairman

Dara Alexander President Warren Nelson Treasurer

James Murphy, Jr., Esq. Secretary Dr. Larry Baratta Josh Garrett Hiram Green Cynthia Holloway Martin Koscso Tom McLean Jack Ratcliffe Donald Smith A. Dewayne Standifer Leland Talcott Sandra Torres Richard Gerson, PhD, CPT, CMC Past Member (1951-2008)

ALS Access Summer 2009

he ALS Association has joined Major League Baseball and Minor League Baseball in the new “4®ALS Awareness” initiative that commemorates the 70th anniversary of Lou Gehrig’s dramatic farewell speech on July 4th this year in baseball stadiums across the nation. Fans everywhere will be cheering for people with ALS and their families, elevating awareness of the disease to an unparalleled level and raising funds for research. Through The ALS Association’s “Covering All the Bases” campaign, you can make a pledge for every hit your favorite team gets on July 4th. Then root for your team because more hits mean more money is raised for the fight against ALS. “Lou Gehrig was a remarkable man – a man of solid character and quiet strength,” said Dara Alexander, Florida Chapter President. “It’s those qualities that define the man behind the disease, and it is his memory that continues to inspire us in our quest to find a cure.” Three other ALS organizations, ALS TDI, MDA/Augie’s Quest, and Project A.L.S. are also participating in the campaign marking the 70th anniversary of the speech and encouraging donations. “We are honored and pleased to

have the opportunity to join these four important organizations in an attempt to make progress in the fight against ALS, a disease that is associated with one of the greatest players in baseball history,” said Major League Baseball Commissioner Bud Selig. Event day highlights include players and celebrities reading the speech. MLB.com will also conduct an online auction to raise funds. The Association’s national network of chapters will also be sponsoring its own special fundraising programs. “For the first time in history, ALS is being recognized and tied to something common amongst all of us, baseball,” said former Boston Red Sox pitcher Curt Schilling, who named one of his sons Gehrig and along with his wife Shonda has raised more than $10 million for The Association. “Unfortunately baseball is why we know about Lou Gehrig’s Disease and it’s been too long in coming, but it’s finally here and that’s all that matters. Making July 4th ‘4®ALS Awareness’ means that every year we’ll be able to raise money for research and increase awareness.” On July 4th, the Florida Marlins will take on the Pittsburgh Pirates at home, but the Tampa Bay Rays game will be away in Texas. The Florida Chapter plans to schedule an additional ALS night at Tropicana Field to be held after July 4th. Stay up to date on new information concerning these games at www.ALSAFL.org. For more information on getting involved in the “Covering All the Bases” campaign, visit www.alsa.org/coveringallthebases or call 888-257-1717. 1


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Piece by Piece Campaign Update

ince January, 150 mannequins bearing the names of those affected by ALS have been making stops around the state and gaining quite a bit of attention. This Piece by Piece Tribute Display is just one facet of The ALS Association’s Piece by Piece Campaign that launched on January 5. Commercials and billboards are also appearing in an effort to spread the message that “Lou Gehrig’s Disease is stealing our loved ones piece by piece.” So far, the Piece by Piece Tribute Display has made appearances in downtown Tampa and St. Petersburg, at the Capitol building in Tallahassee, at Raymond James Stadium, and at several Walks to Defeat ALS™. The campaign stayed in Tampa throughout January and February and in Tallahassee throughout March and April. If you haven’t seen it yet, the campaign will soon come to a market near you!

June & July . . . . . . . . . . . . Orlando

Behind the Scenes

August. . . . . . . . . . . . . . . Miami

Everywhere those mannequins go, one faithful fighter is by their side. ALS patient Steve Franks hitches a trailer to his truck and tows the mannequins from place to place. He was diagnosed in 2003, and while he is no longer able to work, Steve won’t let ALS steal his determination. After learning of the Piece by Piece campaign last November, Steve volunteered to spearhead the task of transporting the mannequins. He bought and sold several trailers on Craig’s List until he found just the right one – a 7’ x 14’ dual axle trailer that has since been wrapped with Piece by Piece artwork and advertisements. Steve has devoted his entire year to the awareness campaign, hauling the mannequins around the state. When he arrives at a location, volunteers will meet him to unload the mannequins from the trailer and arrange them into rows and columns. The routine creates a powerful visual. Continued on next page

September . . . . West Palm Beach & October November . . . . . . . . . . . Fort Myers & December

Top: Steve Franks poses with his truck and the Piece by Piece trailer Bottom: 150 mannequins took over downtown Tampa on January 15

Dara Alexander

President dalexander@alsafl.org ext 101

Staff dIRECTORY 2

Donna Valin Ghioto

Robin See

Care Coordinator Southeast Florida jbianchi@alsafl.org ext 122

Regional Philanthropy Coordinator dvghioto@alsafl.org ext 121

Bookkeeper rsee@alsafl.org ext 104

Director of Corporate Development Walk to Defeat ALSTM jadkins@alsafl.org ext 114

Christine Bright Care Coordinator Southwest Florida cbright@alsafl.org ext 130

Kamden Kuhn

Public Relations Coordinator kkuhn@alsafl.org ext 107

Care Coordinator Tampa hsisay@alsafl.org ext 103

Nancy Baily

Lisa Bublinec

Event Associate ppalmer@alsafl.org ext 111

Joey Adkins

888-257-1717 813-637-9000 www.ALSAFL.org

Jessica Bianchi

Operations Director nbaily@alsafl.org ext 105

Judie Benwick

Care Coordinator Jacksonville jbenwick@alsafl.org ext 112

Administrative Assistant lbublinec@alsafl.org ext 110

Patti Palmer

Rhonda Rittenhouse

Heran Sisay

Katie Walters

Team Development Coordinator Walk to Defeat ALSTM kwalters@alsafl.org ext 115

Care Coordinator Orlando rrittenhouse@alsafl.org ext 109

ALS Association Florida Chapter


The following names are represented in the Piece by Piece Display. Christine Duran, 1952-1995 Mary Jane Bailey, 1928 Joel R. Kesner, 1946-2007 Larry P. Edge, 1946-2009 Larry Ballowe, 1950 Edith W. Kravitz, 1936-2007 Col. Larry Epstein, 1949 Frank Baltar, 1914-1998 Ann S. Leach, 1940-1997 Stephen E. Fahrer, 1973-2008 Norma Barlow, 1936 Enrique Lopez-Cuenca, M.D., Ella Ferguson, 1952-2008 1944-2003 Joseph H. Bigl, 1928-2000 Beatrice Flanagan, 1905-1989 Giacomo Borselli, 1956-1995 Lawrence A. Markowitz, Sr., 1930-2005 Gregory Ballou Ford, 1958 Nancy Bound, 1929-2008 Jacquie Fort, 1949-2009 Donald R. Martin, 1948-2008 Milton S. Bradley, 1943-2005 Bob Fowler, 1939-2009 Kenneth E. Meadows, Richard C. Bradley, 1961-2008 1938-2008 Steve Franks, 1958 Angela C. Breheny, 1930-2003 Al Gonopolsky, 1945-2007 Mark Mendelsohn, 1949-2009 Bill Campbell, 1935-1995 Michael Govostes, 1950 Darryl Montgomery, 1941-1999 Agnes Carrano, 1936-2008 Lee A. Horner, 1939-2006 Daniel Andrew Morrill, Michael A. Clein, 1941-2008 Lawrence P. Hughes, 1926-1982 1972-2007 Betty Collet, 1918-1997 Kurt Hutchings, 1959-2009 Toby Lee O'Brien, 1966-2006 Ouida Cook, 1930-2008 Gustavo Irizarry, 1954-2008 Barbara "Bobbie" Cummings, Alice Ondo, 1931-2002 1942-2008 Keith James, 1971Luis A. Ortega, 1957-2008 Patricia G. Dorion, 1936-2006 Keith Jones, 1970-2009 Sydney Andrew Palladino, 1914-1977 Phyllis F. Jordan, 1930-1990 William J. Duey, 1941-2007

Richard Pascarella, 1959 Ken Patterson, 1968 James Alan Pearlman, 1984-2004 David S. Price, 1953-2007 Gloria (Go-Go) Proper, 1924-1990 Joyce E. Puckorius, 1929-2009 Richard Pascarella, 1959 Paul D. Righter III, 1936-2006 Charles H. Robarts, 1934-2005 Gene Thomas Robarts, 1944 Debra Anne Roe, 1951-2008 Laura L. Scarpate, 1949 Robert (Bob) Seidl, 1945-2004 Roger Shelton, 1943-2008 Paul J. Shields, 1926-2004 Josephine Louise Wright Sicard, 1922-2004

Robert Simmons, 1950-2008 Dean W. Simpson, 1923-1979 Ann Smith, 1949-2004 Hampton Smith, 1956 Ronnie M. Spurgeon, 1943-2004 Rob Squires, 1968-2009 Theresa Stephens, 1946 To All Those Living with ALS, Fort Myers, FL Gerald W. Turianski, 1942-2006 Collis Weaver, 1942-2008 Buster Whitmer, 1951-2006 Constance B. Wilks, 1930-2007 William (Bill) Wimpee, 1954-2008

For more information about honoring your loved one through the Piece by Piece Tribute Display contact Kamden Kuhn at 888-257-1717. You may also sponsor a mannequin online at www.StealingPieces.org.

The ALS Association Florida Chapter has proclaimed the Franks the family that best exemplifies the spirit of “ALS Across America.” The “ALS Across America” national campaign recognizes courageous individuals with ALS who are role models to people with Lou Gehrig’s Disease. These special individuals reflect the spirit of the organization as they make a positive difference in their community by expanding awareness of ALS and embodying the spirit of living life to the fullest. Steve Franks truly has the heart of a servant and represents the theme of “ALS Across America.” He may not be taking the message of ALS across America, but he is physically taking the message of ALS across the state of Florida. Visit www.StealingPieces.org for more information about the Piece by Piece Campaign or for a listing of upcoming dates and locations when the display may be near you.

ren’t Mannequins a the only ones by sporting Piece Piece t-shirts. e too! You can get on ow T-shirts are n on sale at the Piece by Piece isit t e-store . Just v g then click ge or s. ce ie gP in al t the www.S te e-store link a e th r fo ok lo involved and . top of the page

The impressive display stood in Ybor City (left) and on another occasion in front of the Hillsborough County Courthouse (right). ALS Access Summer 2009

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Reflections of a pALS U.S. Diplomat Thomas Ohlson

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had a wonderful childhood growing up in Hollywood, Florida, where I was always active and outdoors. After graduating from college, I returned home certain of only one thing - I did not want a desk job in some office. After working as a sailing instructor, a zoologist, and as a naturalist driving airboats in the Everglades, I joined the U.S. Army. I derived great satisfaction in serving my country, and decided to seek a career in government. After receiving an honorable discharge from the army, I pursued a Master’s degree and was accepted into the Foreign Service. As a diplomat with the U.S. Department of State, I had the good fortune to serve in such places as the Bahamas, Russia, Afghanistan, and the U.S. Mission to the United Nations in New York City. In my work as a diplomat, I often served as a spokesperson for the U.S. Embassy, explaining important issues to foreign audiences. At the United Nations, I was often called upon to make persuasive arguments in front of hundreds of dignitaries. It was while I was in New York in 2005, that I noticed a weakness in my right hand. After countless tests and procedures for what I initially thought was a simple case of carpal tunnel syndrome, I was given a diagnosis of ALS. I was in the best shape of my life, had a beautiful wife, three wonderful kids, and my career was really taking off - I simply could not believe I had such a bleak future. I spent the next year in denial, however in 2007, I began to have difficulty walking up hills, and my speech would become slurred after speaking for any length, especially in cold weather. After consulting with my neurologist and family, I asked for an assignment back home in Florida. This would afford

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me the opportunity to live out my final days in a familiar setting, surrounded by friends and family. I have fantastic colleagues and supervisors at U.S. Southern Command in Miami, all sympathetic and supportive of my condition, but I can no longer even make it into my office. Although I would certainly prefer to be a participant rather than a spectator, I have come to terms with my immobility. However, my inability to communicate

with friends and loved ones has been difficult to accept. I am the same person I always was inside - I think the same, argue the same, and the voice in my head speaks in the same quick and loud baritone I had before my illness. I want to jump up and debate ideas, submit opinions, and make jokes but I no longer have the ability. I would desperately like to read stories to my youngest daughter, but I struggle just to answer her typical questions about the world - thank God for the unconditional love of 5-year olds. Throughout this entire journey, my loving family has supported and comforted me. My wife Cristina, and three wonderful children Logan, Fallon, and Freya are the reason I wake up and view each day as a gift. A benefit to returning home is living near my sister

Dawn and my dear friends Steve and Shannon, who help me with a ride or a good laugh. Steve even attends support group meetings and doctor’s appointments when my wife cannot make them. It has also been my good fortune to have met Jessica Bianchi and the folks from The ALS Association. As a patient advocate, Jessica has no peers. She introduced me to the Paralyzed Veterans of America, who advocate on behalf of veterans with ALS, so that we may receive our full VA benefits. Jessica also calls my doctors to ensure they are following up on my needs and emails me with updates continuously. Although relatively small, The ALS Association makes us feel very well looked after and their personal touch is much more comforting than larger organizations - they really seem like family. They all inspire me and give me every reason to avoid depression and self-pity. I may never again be able to sleep without a mask strapped to my face or walk along the beach. These are now minor inconveniences. The fact I may never see my son grow into the mature, responsible man I know he will be, nor walk my daughters down the aisle, or that I may never have the chance to grow old with my wife hurts me. However, this horrible affliction has taught me one invaluable lesson - stop always looking to the future for happiness and appreciate what you have right now. My memories are now my treasure and every day is another gift to be enjoyed and then added to that treasure. You can never be too rich or too healthy!

Tom Ohlson enjoys life in Hollywood, Florida with his beautiful wife and three children. ALS Association Florida Chapter


personal connection, still walked out of a simple concern for those who are suffering with Lou Gehrig’s disease. For many teams, Walk day was the celebration at the end of a longer race – the culmination of many months of fundraising and battling it out to be the top team. The lead teams in each market raised between $10,000 and $20,000 each. When every family team and corporation added their efforts together, the 2009 Walk to Defeat ALS™ events raised about $850,000! That total represents an all-time record ksonville Jac in off e tak for The ALS Asrs lke wa Over a thousand sociation Florida Chapforward for a cause they care about. ter and another banner Whether in Jacksonville, Miami, Palm year for faithful walkBeaches, Tampa, Orlando, Sarasota, ers across the state. or Fort Myers, walkers came out in Thank you droves hoping their steps would make a walkers, patients, difference for over 1,200 ALS patients families, volunteers, around the state. businesses and The mood was festive. Walk teams community leaders wore colorful t-shirts and moved to the for helping us beat of the music as they made their accomplish such 2-mile treks. Many who walked had a a successful Walk season. loved one who is still fighting the deadly Your efforts were indispensable, and disease. Others walked in memory of a each walk became loved one who has lost the battle. Many people, without any

Damian Ward, a young mem ber of “Walking fo r Daniel,” alon g the route

the evidence of your dedication to this cause. Preparations have already begun for the 2010 Walks where we hope to top this year’s performance and take another giant leap in our quest for a cure.

Team I L ove Lucy walks wit homema h de shirts & signs

Photo by Emma K ing

With seven chances to make a difference, supporters of The ALS Association Florida Chapter didn’t waste any time. This spring, more than 5,000 people across the state of Florida stepped up to the starting line at the Walk to Defeat ALS™ and put two feet

Photo by Miche lle Tyson

The 2009 Walk to Defeat ALS™ Booming Attendance. Banner Year.

Congratulations! 16 Teams Raise $10,000+ or more

ns Al Cleme Photo by

In alphabetical order

Ballowe’s Bunch, Blazing Saddles, Bob’s Buddies, Cathy Fulton’s Always Loyal Support Team, Elaine’s Entourage, Greg’s Gang, Hampton, Hicks Oil Company, Inc., Higgy’s Heroes, Kevin’s Warriors, Nina’s High Rollers, Penguin Team, PNUT’S PALS, Team Grapevine, Team Larry Fein, Team Steve, The Walking Eagles

p a photo o thers for a g e v te Team S

ALS Access Summer 2009

The Florida Chapter is accepting Walk donations through late summer so it’s not too late for your team to join the $10,000+ list! 5


2009 Hard-working Jacksonville vo lunteers take a brief photo brea k

emens Photo by Al Cl

ll uniform mpa walk in fu Ta in s er ht fig Fire

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ia Hancock photo by Victor

Signing advoca cy letters, an important part of pre-walk activ ities

Stadium ar Roger Dean ne , es ch ea B in Palm k, roll, and run Over 800 wal Photo by Miche lle Tyson

Photo by Katty Peraza

ie Schweitzer Photo by Jam

Photo by Miche lle Tyson

Chapter Preside nt, Dara Alexander , presents Troy Dunn, owner of Dunn & Co., with a sp ecial award for crea ting the Piece by P iece Campaign

ographer News 13 phot Central Florida ndo Walk covers the Orla

Staff member, Nancy Baily, hi gh fives a Sar asota Walker ALS Association Florida Chapter


Peraza Photo by Katty

Beach rs walk in Palm Team membe Vane ac M u in honor of Bea

Photo by Jam ie Schweitzer

Plant High Sch ool drum line leads the pack in Tampa

Photo by Vict oria Hancock

emens Photo by Al Cl

Scrapbook

in ith Jazzercize Warming up w a id South Flor

Photo by Miche lle Tyson

Nina’s High R ollers celebrat e their fundraising su ccess

Katie Walters staff member o Walk as ch at w s ep ke after the Orland Tripp the dog tally donations rs ee nt lu vo d an

Energetic walke rs at the Saras ota Walk to Def eat ALS™

Find more walk photos and add your own on our Facebook page. Search “The ALS Association Florida Chapter.” ALS Access Summer 2009

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Research Breakthrough

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consortium of scientists organized and funded by The ALS Association discovered a new gene, ALS6 (Fused in Sarcoma), responsible for about 5 percent of the cases of inherited ALS. Researchers have called the discovery one of the most significant breakthroughs in the recent history of ALS research. It will provide important clues to the causes of inherited ALS, which accounts for 10 percent of all cases, and sporadic ALS, which occurs in individuals with no family history of the disease and accounts for the other 90 percent of cases diagnosed. “This is a momentous discovery in furthering our understanding of ALS,” said Lucie Bruijn, Ph.D., senior

vice president of research and development for The ALS Association. “A new gene provides a new piece of the puzzle we can use to shed light on why ALS develops, and where to focus our efforts on creating new treatments and finding a cure.” The project was supported by a group of leading ALS researchers from around the world, formed as part of The Association’s Gene Identification Project. Their success reflects an unprecedented effort to accelerate the search for genetic mutations linked to all forms of ALS. This is the second ALS-causing gene to be discovered in the past 12 months. SOD1, discovered in 1993, accounts for 20 percent of inherited cases of the disease. Mutations in the TARDP gene account for another four

to five percent. The only well-defined causes of ALS are genetic. In both inherited and sporadic ALS, the disease symptoms and pathology are the same. The possibility that ALS may be caused by several factors is the rationale for The Association’s policy of funding multiple genetic projects around the world and encouraging these leading geneticists to work together and share information to help locate diseaselinked genes for faster, more accurate scientific results. By funding research on a global level, The Association helps put together “genetic pieces” of the ALS puzzle. “Through our support of research such as this study, The ALS Association is committed to finding the causes of ALS, and using that knowledge to develop a cure as rapidly as possible,” Dr. Bruijn said. “We will build on the discovery of this new gene to carry that effort forward.”

In Memoriam

We extend our sympathy and continued support to the family and friends who have recently lost their loved ones to ALS. We remember their courage in living and keep their spirits alive in our memories and hearts. Monika Adams, Palm Beach Gardens Graciela Alvarez, Gotha Christopher Ambler, Palm Beach Walter Anderson, Cocoa Beach Judith Aveni, Spring Hill Thomas Becker, Charlotte Mary Bentley, Middleburg Scott Bezanson, Nokomis Starr Bishop, Jacksonville Chuck Blackton, Orlando Viola Bogardus, Sebring William Bozeman, Brooksville Carolyn Braithwaite, Jacksonville Melvene Brehme, Jacksonville Joseph Cappiello, Inverness Anthony Cardinale, Fort Myers Yolanda Cito, Wellington Robinson Colon, Cape Coral Ouida Cook, Lake Worth Nancy Cook, Milton Dominick Cristo, Boca Raton Celestine Dantzler, Jacksonville Dianne Decarlo, Spring Hill

Richard DeWitte, Jacksonville Ana Diaz, Lakeland Larry Dupree, Callahan Larry Edge, Lithia Robert Edwards, Bradenton Samantha Evans, Bradenton Rose Felts, Estero David Ferguson, Jacksonville Kenny Ferrell, Pinellas Park Thomas Fife, Lakeland Jacquie Fort, Vero Beach Robert Fowler, Clermont Fred Francois, Naples Ted Garn, Port Orange Jacquelin Graham, Macclenny Richard Greenspan, Wilton Manors Donald Hernick, Melbourne June Hughes, Marianna Kurt Hutchings, Fort Myers Gustavo Irizarry, Deltona Michael “Keith” Jones, Saint Augustine Loretta Karlander, Clearwater Firooz Khosrowzadeh, Jacksonville Beach

Loretta Kuntz, Palm Beach Gardens Kirby Lester, Tampa David Lewis, Crestview Robert Lewis, Wesley Chapel Janice Longfellow, Alva Robert Martini, Cocoa Thomas McQuay, Loxahatchee John Miller, Fort Lauderdale Edna Mixon, Umatilla John Moffatt, Winter Park Denis Moleski, Palm Coast Allen Moore, Fort Myers Jean Morey, Boynton Beach Dennis Murphy, Orlando Howard Naumann, Vero Beach Leonard Njus, Sebring George Parrish, Orlando Tony Perry, Sebastian Joyce Puckorius, Sebring Jacquelyn Quinn, Port Saint Lucie Rosa Quispe, Miramar Stanley Ratka, Jacksonville Odell Rogers, Saint Petersburg

Fanny Sanchez, Gainesville Christina Seegert, Seminole Mike Shively, Sarasota Robert Simmons, Naples Diane Stead, Hudson Rob Squires, Vero Beach Wallace Sittsworth, Estero Don Sommerfield, Cape Coral Frank Stefurak, Palm Harbor Rasa Szepelak, Plantation William Thoresen, New Smyrna Sol “Al” Ward, Delray Beach Billy Ward, Saint Augustine Lavinia Wasson, Deltona Marilyn Watson, Orange Park Ruth Whited, Ormond Beach Keith Wilbourn, Apopka Betty Williamson, Pensacola William Wimpee, Jacksonville Susan Yoakum, Cocoa Winifred Young, Trinity Ruth Zeeberg, Deerfield Beach

Listed above are those who passed since the last publication, based on information provided to our offices. Please notify us of any corrections or omissions.

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ALS Association Florida Chapter


Need Medical Equipment? Find it Here!

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he Florida Chapter maintains several equipment “loan closets” around the state. Generous companies like Wheelchairs Plus, Baycare Homecare, Ability Medical, AMI, and Gulf Coast Rehab donate their space to house our equipment and also make complimentary pick-ups and deliveries to accommodate the needs of pALS. Because of these loan closets, ALS patients can receive necessary equipment like wheelchairs, walkers, lifting devices, and communication aids that would otherwise be very expensive. For more information about obtaining or donating medical equipment please call 888-257-1717.

Equipment Donors

We extend our thanks to the following donors for their generous gifts of equipment that have been given since our last newsletter was published. Because of your kindness, we can provide help to patients currently suffering with this illness. Communication Devices: Carolyn Braithwaite Bobbi Izlar Alicia Jones Loretta Kuntz Janice Morey Barry Sweger Durable Medical Equipment: Al Adams - walker; cane; companion chair Alice Armstrong - power wheelchair Oscar Blasingame - manual wheelchair; walker

2009 Adv ice for

. W hile upcoming year e th of e ev e lge the on th is w ise to indu I am w riting it k in th I e, is d all w it h prom t upon 2008 an ec fl re 2009 is filled d an t as nce it live in the p of 2008 but si n fa a temptation to ot n as arn. Cer tainly, I w of it s lessons. een much to le b e av h st u m there was... didn’t k ill me the year that om fr s ay w -a p ten take Here are my to your ow n sponsible for re e ar u yo y - Ult imatel health care ur family d time w it h yo en sp d an e ov - L ho you are e w indow to w th e ar s d n ie - Fr ect them icapped; resp d an h e th e iz n - Don’t patro rs e best in ot he - Look for th e thank ful - Pray and b , let them wants to help - If someone re possible d an xiet y whe an ry or w it - Lim - Sleep d money - Give time an , or whistle 31/08 - Sing, dance Keith Jones 12/

ALS Access Summer 2009

Mary Ann Bozeman - manual wheelchair Katherine Brown - 2 power wheelchairs; ramps Bushrod Burns - power wheelchair Susan Dolter - power scooter Marcella Dorman - wheelchair; walker wheelchair lift Larry Epstein - power wheelchair Valerie Finley - power wheelchair Harold Greenberg - grab bars; power wheelchair; manual wheelchair; walker Richard Levasseur - power wheelchair Janice Morey - hospital bed; walker Ken Patterson - lift chair Arlene Rhodes - patient lift Lorraine Romine - power wheelchair; 3 walkers; trapeze and lift chair Mary Solt - manual wheelchair Karen Wenger - power wheelchair Vanessa Williams - lift chair

On New Year’s Eve, ALS patient Keith Jones blogged this list of lessons learned in 2008. Less than a month after Keith posted this, the young businessman passed away, but his memory lives on. Keith’s family is continuing a venture that he began called “Project 2-4-20.” Keith’s goal was two-fold: 1) to live strong and well until 2/4/20 and 2) to raise two million dollars for the fight against ALS by 2/4/20. While ALS robbed him of his first goal, Keith’s family continues to pursue fundraising for “Project 2-4-20,” having raised over $44,000 so far. To contribute to this special fundraising initiative visit The ALS Association Florida Chapter’s Community of Hope at www.ALSAFL.org and search for Keith Jones.

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Thank You Donors! The ALS Association Florida Chapter treasures each and every financial gift we receive. In an effort to “go green” and save printing costs, we have provided a listing on our website of persons who have donated $250 or more to our organization since November 2008. Please visit web.alsa.org/donors for a full listing of special gifts. Thank you for your generous support of the fight against ALS!

ALS: To Tube or Not to Tube By Melody Chavez, Clinical Dietitian, Tampa, Florida

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he word “feeding tube” may be intimidating for people with ALS. Most people have heard negative stories regarding a feeding tube through debates like the Terri Schiavo case heard in the news. Others may see a feeding tube as “giving in” to this disease. However, learning what choices you have regarding this issue will help patients to be proactive in their care. A significant predictive factor for survival in ALS is maintaining good nutritional status. Despite best efforts to maintain adequate nutrition and hydration, malnutrition can occur. The physical ability to prepare and eat food due to dysphagia, poor pulmonary status, breathing difficulty, chronic infections, and psychological distress all contribute to malnutrition. Gastrostomy tubes, better known as g-tubes, are the most commonly placed feeding tubes in people with ALS. A gastrostomy feeding tube insertion is the placement of a tube through the skin and the stomach wall directly into the stomach. Having a foreign body present in the stomach might sound unpleasant. However, this is a minor outpatient surgical procedure which might not even require an overnight stay in the hospital. A feeding tube should be introduced and discussed early after diagnosis to allow patients time to consider it before dysphagia reaches the serious stage. Some patients do not want to hear

about this in the early stages. However, it is important to become educated and consider this as an option in your care. Discussion with your physician about the timing and placement of a g-tube is essential. Early placement of a g-tube before it is “needed” to improve impaired nutritional status may provide ALS patients with the greatest benefit and least risk1. The American Academy of Neurology’s current guidelines suggests a g-tube placement be made before the forced vital capacity of a patient falls to 50%1. Patients who wait until their respiratory capacity falls below 50% of their predicted volume are at greater risk for developing respiratory complications. Some people become very anxious during meal time or when taking their medications due to coughing or frightening choking episodes. The decision to have a feeding tube placed before eating becomes a chore can help patients continue eating as an enjoyable process. This will help patients eat only as much as is comfortable and use the g-tube for supplemental feeding to maintain good nutrition. Knowing that this means of nutrition will not alter the ability to continue to eat can be helpful in calming fears of tube feeding and surgery. The tube can also be an excellent avenue to administer medication if pills become too hard to swallow. Feeding tube placement is a very personal decision. Nutrition intervention

is essential for a proactive, aggressive treatment plan for ALS. However the patient’s wishes as well as the best clinical evidence should drive your decision, incorporating the patient and caregiver’s definition of “quality of life.” Symptoms that warrant consideration for a G-tube placement: 1. Dysphagia with coughing 2. Choking during ingestion of food, fluid, or medication 3. Sialorrhea (drooling or excessive salivation) 4. Fatigue with eating 5. It takes too long to eat a meal, and it’s not fun any more 6. Significant anxiety with eating that creates too much of a burden for the patient (sometimes the caretaker’s anxiety becomes the patient’s anxiety as well) 7. Pills are too hard to swallow… literally! However, until such time that a PEG might be placed, many pills can be crushed and added to puddings, applesauce, etc. 8. Respiratory status has been declining and the ALS team is concerned that delay in PEG placement could make the procedure too risky in the future 9. Unhealthy, unintentional weight loss that alters strength and is concerning to the patient enough to intervene.

References 1. Procaccini, N.J., Nemergut, E.C. Percutaneous Endoscopic Gastrostomy in the Patient with Amyotrophic Lateral Sclerosis. Practical Gastroenerology, Series #60, 2008. p. 24-34.

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ALS Association Florida Chapter


2009 National ALS Advocacy Day and Public Policy Conference

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dvocates from the Florida Chapter and across the country joined together on Capitol Hill as The ALS Association hosted the National ALS Advocacy Day and Public Policy Conference. The three day conference, which took place May 10-12 in Washington, DC, provided the ALS community with an opportunity to

Advocates gather at a candlelight vigil in Washington D.C.

come together, share their experiences and hopes and urge Congress to join the fight against this horrific disease. Through advocacy, we are developing the roadmap that will lead us to a treatment and cure. The impact that Advocacy Day has had is evident. Advocates have done more than just raise awareness of the disease in the halls of Congress. They have fought for and passed significant legislation that not only benefits the lives of pALS and families today, but also those whose fight has not yet begun. For example, since Advocacy Day last year, we have helped to: • Enact the ALS Registry Act (Public Law 110-373). The registry may become the single largest ALS research program ever created!

• Implement historic new regulations at the Veterans Administration that make ALS a service-connected disease and provide more than $500 million in health and disability benefits to veterans and their survivors. • Secure $5 million to continue the ALS Research Program at the Department of Defense, the only ALS-specific program at DOD, which is designed to find new treatments for the disease. In fact, our advocacy accomplishments in 2008 alone may result in the federal government spending as much as $1 billion on ALS over the next ten years! Together, we are making a difference! If you have any questions or would like to become an ALS advocate, please contact Nancy Baily at 888-257-1717 ext 105 or nbaily@alsafl.org.

“Wake up”, “Go to Sleep”, “Wake up”. Submitted by ALS Patient, Leon Peek

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hose are the commands that I use to open and close my new voice recognition software. It goes by the name of Dragon Naturally Speaking and is distributed by Nuance. Coping with ALS we find ourselves always adjusting to do the things others take for granted. With the loss of my typing fingers I found myself frustrated in wasted time and energy making corrections. This new software is very advanced and is easy to setup and train. Dragon simply asks you to read into a microphone (included) while it records the way you pronounce words and how you construct sentences. It is akin to having your own secretary, and so far, one that doesn’t talk back. It brings a new level of quality to your

ALS Access Spring 2009

letters because it captures your very own personalized writing style. I would advise this for anyone who would like to give those fingers a break while being able to communicate better in the days ahead. Below I have provided you with a customer service number. Tell them about ALS. They have special pricing for disabilities. With Dragon you simply say “smiley face” and one is created for you. :-) Customer service will answer questions to help customers find the product best suited for their needs and offer pricing for individual purchases. You can reach Nuance at 1-800-654-1187.

we’ll miss you, patti!

Durable Medical Equipment coordinator Patti Allman will soon be moving with her family to Dayton , Ohio. We are grateful for her three years of service on the staff of the Florida Chapter and wish her and her family the best!

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Florida Chapter Upcoming Events June 20 The Barney Coomes ALS Golf Challenge Orlando, Florida

Find The Florida Chapter on the Web! Become our “fan”

July 4 MLB “4®ALS Awareness” All Major League Baseball Games August 8 Fort Myers Miracle Lou Gehrig Night Hammond Stadium

Daytona-Ormond Beach The als Association Florida Chapter

Fort Myers Gainesville Jacksonville

Add us as a “friend”

Leesburg Manasota Melbourne Naples

www.myspace.com/ alsflorida

Become our “subscriber” Piece by Piece Tribute Displays visit www.StealingPieces.org for dates

ALS support groups provide hope to those living with ALS while providing valuable networking opportunities for patients and their families. You will find practical advice on day-to-day living with ALS and a safe place to express your concerns. Boynton Beach

Other Lou Gehrig Night dates to be announced

November 7 Tour de Vie: A Bike Tour to Defeat Lou Gehrig’s Disease Walsingham Park, Largo, Florida

Support Group Locations

Ocala Orlando Pensacola Tallahassee Tampa Treasure Coast/Stuart Weston

www.youtube.com/user/ alsafl

Vero Beach Visit www.ALSAFL.org or call us at 888-257-1717 for support group dates and directions.

NONPROFIT ORG US POSTAGE

3242 Parkside Center Circle Tampa, FL 33619-0907

PAID

TAMPA FL Permit No 2910


ALS Access June 2009