Issuu on Google+

Q U A R T E R LY N E W S M A G A Z I N E O F T H E A L S A S S O C I A T I O N F L O R I D A C H A P T E R

/ 5

7

7

Making an Impact

PIECE BY PIECE 9

G

G

ALS AND SWINE FLU: WHAT YOU SHOULD KNOW NEW CLINICAL TRIALS ADVANCE ALS RESEARCH

D EC E M B E R 210 0 9


Staff Dara Alexander President dalexander@alsafl.org - ext. 101 Joey Adkins Director of Corporate Development jadkins@alsafl.org- ext. 114 Nancy Baily Operations Director nbaily@alsafl.org - ext. 105

Board of Trustees James Moroney Chairman David L. Smith Past Chairman Dara Alexander President Martin Koscso

Thank you. The ALS Association Florida Chapter treasures each and every financial gift we receive. The following acknowledgement lists persons and groups who contributed $250 or more to the organization since our last publication. Thank you to all who contributed. Because of your support, we are able to fund needed research and provide valuable patient services to individuals with ALS.

Judie Benwick Care Coordinator, North Florida jbenwick@alsafl.org - ext. 112

Vice President

Jessica Bianchi Care Coordinator, Southeast FL jbianchi@alsafl.org - ext. 122

James Murphy, Jr., Esq.

Silbaugh), Paul Coleman, Community Foundation of Tampa

Secretary

Bay, David C.G. Kerr Memorial Fund (in memory of David

Hiram Green

Kerr), Scott Engebretson, John Ferguson, Stacey Ferrell

Christine Bright Care Coordinator, Southwest FL cbright@alsafl.org - ext. 130

Warren Nelson Treasurer

Cynthia Holloway

Samuel G. Agnew, AMI Mobility, Andrews McMeel Universal Foundation, Bruce & Gayle Barrington, Stuart Billington, Gloria Boudreau (in memory of Velma M.

(in memory of Kenny Ferrell), Florida Neurological Group, Mary Forcier, Jennifer Fuerst, Meritt Gardner, Ronald

Tom McLean

J. Garon (on behalf of Dr. Larry Baratta Research Fund),

Lisa Bublinec DME/Respite Administrator lbublinec@alsafl.org - ext. 108

Richard Nimphie

Goodrich Corporate Partners Giving Plan, Thomas M.

Aimee Freedman Care Coordinator, Northeast FL afreedman@alsafl.org - ext. 117

Donald Smith

of Hilde Heard), Alan & Linda Hodgson, Elva Hoffman,

A. Dewayne Standifer

Island Aviation, G.W. & Sheila Jacobs (in memory of Kevin

Donna Valin Ghioto Regional Director of Development dvghioto@alsafl.org - ext. 121 Kamden Kuhn Public Relations Coordinator kkuhn@alsafl.org - ext. 107 Patti Palmer Event Coordinator ppalmer@alsafl.org - ext. 111 Rhonda Rittenhouse Care Coordinator, Orlando rrittenhouse@alsafl.org - ext. 109 Robin See Bookkeeper rsee@alsafl.org - ext. 104 Heran Sisay Care Coordinator,Tampa hsisay@alsafl.org - ext. 103 Michelle Tyson Walk Support Associate mtyson@alsafl.org - ext. 110 Katie Walters Internet Marketing Manager kwalters@alsafl.org - ext. 115

2

Jack Ratcliffe

Leland Talcott Sandra Torres

Griffin (in memory of Thomas J. Griffin), Gymnastic World (in memory of Debbie Roe), Wayne & Hilde Heard (in honor

Howells), David James, Donald & Mary Johnson, Joy & Steve Rudy Charitable Foundation, Inc., Todd Kinnaird & Friends (in memory of James Hewitt), Willard Kostecki,

Richard Gerson, PhD,

Krewe of the Brass Monkey, Robert Miller (in memory of

CPT, CMC

Maureen Slattery Miller), Vivian Mohr (in memory of Carol

Past Member (1951-2008)

O’Grady), Christina Moliteus, Richard & Lissa Mounce, Ernst Mueller, National College Services, Inc. (in memory of Robert Gosdeck), Mary Nelson, Daniel O’Day, William

ALS Association Florida Chapter

& Janis Paris, Earl E. Price (in memory of Kevin Howells), Betty Putman, Quantum Foundation (in honor of Daniel Henry), Joanne Regli, Dean & Mary Ruelle, Thomas & Mary

3242 Parkside Center

Ryan, Robert & Denise Scheffer, Paul & Ella Schutt, David

Circle

L. Smith, Don & Mary Helen Smith, Southern Rescue

Tampa, FL 33619-0907

Tools, Dennis Spisak (in memory of Robert Gosdeck), Dave

888-257-1717

Stetler, Witt Storm, Dana Sturdevant (in memory of Robert

813-637-9000

Swain), Sunrise Senior Living Center, Stuart & Jill Tane,

www.ALSAFL.org

The USAA Foundation, Inc., Ben E. Thompson, Jr. (in memory of Kevin Bailey), Toys R Us Corporate Philanthropy Department, Tyrone Square Mazda, Walgreens Employee Giving Campaign (on behalf of Walgreens Distribution Center), Peter Walsh, Robert & Elizabeth Weiss, Meg Weist (in memory of Miriam Moons), Carolyn White

MAKING AN IMPACT PIECE BY PIECE The Piece by Piece awareness campaign is approaching its one-year anniversary, and it has proved to be the talk of the ALS community. The mannequin metaphor has become a famous symbol for The Florida Chapter, raising ALS awareness with an edgy design and grabbing the attention of onlookers around the state. [ full story on page 4-5 ]

3


The names of 100 ALS victims are now represented in the display, and it has traveled to over 20 locations around the state. Upcoming Piece by Piece Tribute Displays Piece by Piece poster display in Tampa’s Centro Ybor.

T

he campaign has also been rec-

March and April, the display wowed state legisla-

supporters has increased by more than 25%, and

ognized with several industry

tors at the capitol building in Tallahassee. In May,

the initiative has raised over $40,000 for the fight

the display made five different stops in Northeast

against ALS. Thank you for your support of the

Most recently, the Tampa Bay

Florida. In the summer months, it stopped in Cen-

Chapter of the Public Relations

tral Florida, and this fall, it’s been in Southwest

Piece by Piece campaign. You have helped us

Society of America awarded

Florida and Miami.

awards for creativity and design.

us with a special recognition – “non-profit of the

We still plan to complete several more bookings

year.” Most importantly, the Piece by Piece cam-

in the Miami and West Palm areas by the begin-

paign has raised ALS awareness in the state of

ning of 2010. But it doesn’t stop there! We cur-

Florida to an all-time high.

rently plan for the Piece by Piece Tribute Display

spread the word and truly make an impact on the number of people who can recognize the devastating effects of this disease. Let’s keep it up in 2010! Don’t forget to visit www.StealingPieces.org

The names of 100 ALS victims are now repre-

to be on exhibit in selective locations throughout

frequently. There, you can find an updated list of

sented in the display, and it has traveled to over 20

2010. Let us know if you have a specific location

upcoming displays, photos of all of the names rep-

locations around the state. In January and Febru-

you’d like us to consider.

resented in the display, and recent news stories

ary, we made our mark on the Tampa Bay area. In 4

Since the campaign’s launch, our network of

Miromar Outlets December 4-5, 2009 Fri & Sat: 10am – 9pm 10801 Corkscrew Rd. Estero, FL Town Center at Boca January 8-10, 2010 Fri: 10am - 9pm Sat: 10am - 9pm Sun: 12pm - 6pm 6000 Glades Road Boca Raton, FL Cape Coral Irish Festival March 6-7, 2010 Bavarian Gardens 2101 W. Pine Island Road Cape Coral, FL

about the campaign. 5


INSPIRATION

|

CONNOR MOHNEY

A Note about Piece by Piece

Heart of Gold,

My son and I had a deep heartfelt moment when we found my dad’s shirt with his name on it. We

and Dimes, and Nickels, and Quarters Connor Mohney is an eight year old kid who

loved volunteering for the display and realized every shirt was a

Connor Mohney

loved one with a story to tell.

loves to have fun but has a heart full of wisdom beyond his years. In September, Connor emptied his entire piggy bank and asked his mom to take the contents to the Piece by Piece Tribute Display as his donation.

I just didn’t realize my emotions “You think of all the work you put into raising children, and I thought maybe I did something right,” Connor’s mom, Keleigh Mohney, said. After the display, we tallied up all of Connor’s change (including five Chuck E. Cheese tokens), and we found $28.92! “He just out of the blue said ‘Take this money. I wanna give it for Papa,’” Keleigh explained. Connor’s grandfather died of ALS when he was only two years old. Yet, his family has stayed very involved in the cause, volunteering whenever they have the opportunity. Connor’s selfless action has become an inspiration to many who are fighting ALS and serves as a great reminder that every penny counts. You don’t have to be a millionare or a rocket scientist to make a difference. We think the world needs more Connors, and we think you’ll agree!

stored for 10 years could perk up so quickly after seeing his name. It certainly hits home when you can put a name with the shirt. I thought the display was a classy, direct, informative presentation, and I look forward to volunteering again when I can. It was also a great experience for my son. Teenagers tend to hide their emotions but this experience shed new light. Many thanks, Tom Grifffin

20% OFF Piece by Piece T-shirt coupon code: newsletter0910 Expiration date: 1/29/2010

The mannequins aren’t the only ones sporting Piece by Piece t-shirts. You can help us raise awareness too. Visit www.StealingPieces.org to get yours today. 6

7


YOUR HEALTH

4 Tax Exemptions Every ALS Patient Should Know About

2

Ex-Service Member (and surviving unmarried spouse): This provides a $5000 exemption. A veteran with 10% disability or more from war or service-connected misfortune is eligible to apply. The surviving spouse must have been married to the veteran for at least 5 years. S ervice-Connected Total and Permanent Disability: Any veteran with a total and permanent disability may qualify for total exemption of homesteaded property. The benefit may carry over to the surviving spouse as well if the spouse continues to reside in the home and does not remarry. The spouse may also carry some of the benefit to a new home when he/she moves. P ersonal Tax Deductions for Medical Expenses: Many health-related items which you pay for throughout the year may qualify for deductions on your federal taxes. You must have paid for the item yourself and not have been reimbursed by insurance. • Insurance premiums that are not paid with pretax dollars. • Medical equipment such as BiPap, CoughAssist, urinals, handicap van conversions (only conversion costs), turning bed, hospital bed, walker, lift chair, cane, wheelchair, computers, and other assistive technology programs that enable you to perform tasks. • Remodeling to accommodate your condition. • Travel for medical purposes including mileage to and from doctor appointments, clinics, hospitals, prescription pick-ups, support groups, taxis, bus, ambulance, airplane tickets, parking, car/van rentals, tolls, and lodging for overnight medical purposes. • Nursing home and in-home health care including caregivers, physical therapy, massage therapy as long as it serves a medical purpose from physician’s note. • Many other health-related items like prescription drugs, hospital stays, dental visits, chiropractor visits, psychological care, glasses, hearing aids, batteries, medical supplies, lab work, x-rays, and any special foods (i.e. Ensure).

3

4 It’s already time to start thinking about tax season, and we want you to know about special exemptions that may be available to ALS patients and their families. Depending on your individual situation, you could be eligible for special property tax exemptions. Don’t wait too long because many counties require that you file your paperwork by March 1, 2010. Below are explanations of several exemptions for which you may qualify. Consult your accountant to find out if you are eligible for these or other exemptions.

1

Paraplegic and Quadriplegic: This exemption provides a total exemption from taxation of real property. You must first claim homestead exemption on your home. Those filing for the paraplegic exemption must meet an income restriction ($24,289 per household in 2008). However, there are no income restrictions for the quadriplegic exemption according to a rule that applies to the entire state of Florida. You will need two physician statements from different practices, stating that you are a paraplegic or quadriplegic. 8

|

SEASONAL FLU, H1N1, AND ALS

If you or someone you love is living with ALS, you’re probably asking a lot of questions about the seasonal flu and swine flu. Are people with ALS at risk? Should pALS receive flu vaccines? Doctors say the short answer to both of those questions is “yes.” People with ALS are already at increased risk for respiratory problems associated with viral and bacterial infection, and the flu can deliver a harsh blow. Patients with ALS who contract the flu can suffer from a decreased appetite and a severe cough. Both are serious problems for pALS. The H1N1 vaccine and the seasonal flu vaccine are two separate vaccines against different viruses. The H1N1 vaccine protects only against the

new H1N1 influenza virus, which is the cause of swine flu. It does not protect against other strains of seasonal flu. The seasonal flu shot, which is offered every year provides protection against an additional three common influenza viruses. Both vaccines are expected to reduce illness, limit hospitalizations, and potentially save lives. Both of these vaccines can be given as a nasal spray instead of an injection. The nasal spray contains a live but weakened virus, unlike the injection, which is made of inactivated pieces of the virus. The Centers for Disease Control (CDC) recommends that patients who receive the live nasal sprays for seasonal flu and H1N1 separate the two vaccines by four weeks. The CDC recommends that people who have health conditions associated with higher risk of medical complications from influenza get the H1N1 vaccine. That includes everyone with ALS. The CDC has also found these vaccines to be safe and beneficial. Anyone with an allergy to eggs should not receive the H1N1 vaccine, since chicken eggs are used in the manufacturing process. If you have a weakened immune system, you should not receive the live virus nasal spray. Get the injection with the killed virus instead. The side effects of the H1N1 vaccine are similar to those associated with the seasonal flu vaccine: pain at the injection site, muscle aches, headaches, and malaise (feeling run down). Rarely, patients suffer severe allergic reaction to the vaccine. Many doctors also recommend that ALS patients get the pneumonia (Pneumococcal) vaccine. There are more than 80 different types of Pneumoccus bacteria, and 23 of those are covered in the current vaccination. You may be able to get the pneumonia vaccine at the same time you get your seasonal flu vaccine. However, the seasonal flu vaccination and H1N1 should be your first priorities. The information in this article was provided by Edward Kasarskis, M.D., Ph.D, Director of the University of Kentucky Neuroscience Center ALS Multidisciplinary Center in Lexington, Kentucky, professor in the Department of Neurology at the University of Kentucky, and Chief of Neurology at the VA Medical Center in Lexington, Kentucky. 9


NEW CARE FUND

On Your Mark, Get Set, Register! It’s that time of year again! Pull out your walking shoes and start gearing up for the spring Walk to Defeat ALS™. The most successful walk teams are those who register early! That gives you more time to get creative and figure out how you can make a big difference for people living with ALS. We’re gearing up for another record-breaking year and hoping to raise over $1 million in 2010. Help us by locating the Walk nearest you and registering your team today! Our new website will make it easier than ever. And don’t forget to contact our walk support staff who can give you all the tips and tricks you need to help your team rise to the top. They’re waiting for your call and ready to do the work for you! South Florida and Palm Beaches Walks Donna Valin Ghioto 888-257-1717 ext 121 dvghioto@alsafl.org Greater Tampa Bay and Orlando Walks Joey Adkins 888-257-1717 ext 114 jadkins@alsafl.org Jacksonville and Sarasota Walks Patti Palmer 888-257-1717 ext 111 ppalmer@alsafl.org General Walk Support Michelle Tyson 888-257-1717 ext 110 mtyson@alsafl.org Technical Support Katie Walters 888-257-1717 ext 115 kwalters@alsafl.org

www.walktodefeatals.org 10

| TRIBUTE TO LOVING WIFE AND MOTHER

A soft-spoken wife and mother of three, Maureen Miller loved children – her own, her seven grandchildren, and the many others she taught during her lifetime. Her husband of 40 years says she did not have a mean bone in her body - one of those people no one disliked. In 2008, the 60-year-old woman’s life changed forever when she was diagnosed with ALS. Then after a hardfought battle, the illness claimed her life this past July. “In the last few months, when Maureen truly suffered most intensely, she saw the importance of care to alleviate the pain,” her husband, Bob Miller, said. “She asked me during that time to do what I could to help individuals that were similarly afflicted and in financial need.” To honor Maureen’s wish, Bob Miller recently made a generous gift to establish the Maureen Slattery Miller

giver burden. “Rather than fund research, Maureen desired to try and help those presently suffering. She realized a successful treatment or cure would come, but she wanted to help people in the here and now,” Bob said. “I know this special fund will allow Maureen’s memory to live on and give others the help they need in the midst of a devastating disease.”

Care Fund. The fund will provide core services to sup-

If you would like to make a gift to the Maureen Slat-

port those living with ALS who are in financial need.

tery Miller Care Fund or establish a special fund in

For example, a patient may receive needed transporta-

your loved one’s memory, contact Dara Alexander at

tion services or in-home nursing care to alleviate care-

888-257-1717 ext 101 or dalexander@alsafl.org.

Arcadia Health Care has been providing home care services to people of all ages with varying conditions, diseases, disabilities, and injuries since 1978. The type, amount, and duration of care are specific to each individual client. For some, it is daily care from two to 24 hours a day, and for others, it is respite services for a primary caregiver. Whatever the situation, Arcadia is committed to providing caregivers who are qualified, trained, and dedicated to customer satisfaction.

Arcadia. Keeping People Independent.

www.arcadiahealthcare.com 866-874-0333

While we care for many people who have ALS, each individual’s situation is unique. So, we take pride in developing a plan of care that addresses the needs as well as the desires of our customer. Emotional support and compassionate companionship can be as essential and beneficial as physical care. An excellent example of Arcadia’s ability to maximize an individual’s quality of life is a 51-year-old client diagnosed with ALS ten years ago, who lives on a lake in a small Michigan community with his wife and two teenaged daughters. Despite the fact that he is on a ventilator and has limited use of his limbs, he engages in an active social life which includes attending parties, dining in restaurants, voting, and even boating! With the support of his family as well as his Arcadia caregivers, he is able to remain a very vital force in the lives of his family and friends. Without the 24-hour nursing care he receives from Arcadia, our client would not be able to live in the comfort of his own home surrounded by his loving family. Arcadia Health Care’s mission is to “Keep People at Home and Healthier Longer,” and we are proud to assist him do just that!

11


Baseball Teams Take Swings for ALS This fall, the St. Lucie Mets teamed up with Humana and The Florida Chapter to raise awareness and money to fight Lou Gehrig’s Disease. Humana donated $100 to The Florida Chapter for every homerun the St. Lucie Mets hit at their home field during the entire season. After adding up all of the home runs, Humana presented us with a $10,000 check! Thank you Humana! Your generosity and commitment to this cause is truly making a difference for people living with ALS. You can keep up with America’s favorite pastime all winter long. The Florida Winter Baseball League is also doing their part to fight ALS. Throughout the season, fans may purchase baseball pinups at home games of both the Seminole County Naturals and the Lake County Black Bears. Then, in January, each team will dedicate a night to salute Lou Gehrig and present a check to The ALS Association for the total amount raised from the baseball pinups. Check our upcoming events listing for dates. See you at the ballpark!

First FDA-Approved ALS Stem Cell Trial to Begin

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. Linda Agee, Oxford Barbara Anderson, Lakeland Brian Arnold, Mount Dora Marilyn Blake, Wellington James Boyle, Zephyrhills Antoinette Carvelli, Port St. Lucie Joseph Connolly, Hobe Sound Harry Dewberry, Pensacola Col. Larry Epstein, Tampa Harry Gianneschi, Jacksonville Robert Gosdeck, Fort Myers Betty Hathaway, Thomasville

Norman Heikkinen, Inverness John Hershiser, Saint Augustine Richard Jackson, Wakefield Harold Jonas, Boca Raton Dee Jones, Bradenton Ken Kroll, Melbourne Sandra Lachute, Fort Walton Beach Edward Lerash, Saint Petersburg George Malcolm, Orlando Tatiana Moiseev, Sarasota Miriam Moons, Longwood Julia Morse, Jacksonville

Marcia Olafson, Jacksonville Juan Pecina, Live Oak Alcinda Pinansky, Clearwater Cheryl Polidori, Valrico Patricia Raver, Orlando William Rountree, Interlachen Randy Scott, Palm Coast Marion Silver-Coblyn, Boynton Beach Deborah Silvestro, Ormond Beach Fay Thomsen, Naples Charles Wescott, Fort Myers Roger Winship, Tallahassee

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. 12

The U.S. Food and Drug Administration (FDA) has approved a Phase I trial aimed at treating ALS with spinal cord stem cells. Neuralstem, Inc., based in Rockville, Maryland, will launch the trial and will study the safety of Neuralstem’s cells, as well as the procedures required for multiple injections of the cells directly into the gray matter of the spinal cord. The FDA’s approval represents a significant step toward delivering regenerative medicine directly to damaged neural cells in humans. “This is an extremely important trial that will test the stem cell approach in ALS in a rigorous way,” said Dr. Lucie Bruijn, Senior Vice President, Research and Development at The ALS Association. “This is the first stem cell trial in ALS, and it will be conducted initially to study its safety in humans.” While this trial aims to primarily establish safety and feasibility data in treating ALS patients, researchers hope to be able to measure a slowing down of the ALS degenerative process. The trial will be led by Dr. Eva L. Feldman, M.D., Ph.D., director of the University of Michigan Health System ALS Clinic and the Program for Neurology Research & Discovery, and Dr. Jonathan Glass, director of the Emory Neuromuscular Laboratory and Director of the Emory ALS Center, both ALS Association-funded researchers world-renowned

for their study and treatment of ALS patients. “We are very excited about this clinical trial,” Feldman said. “This is a major advancement in what still could be a long road to a new and improved treatment for ALS. In work with animals, these spinal cord stem cells both protected at-risk motor neurons and made connections to the neurons controlling muscles. We don’t want to raise expectations unduly, but we believe these stem cells could produce similar results in patients with ALS,” Dr. Feldman concluded. The ALS patients will be treated through spinal injections of its patented human neural stem cells. This first trial is very small and will primarily evaluate safety of the cells and the surgery procedure. It consists of 12 patients who will receive five-toten stem cell injections in the lumbar area of the spinal cord. The patients will be examined at regular intervals post-surgery, with final review of the data to come about 24 months later. Nick Boulis, M.D., who will be involved in this trial, was funded by The Association for his preclinical studies that provided information for the trial design. Pre-clinical work has shown Neuralstem’s cells to extend the life of rats with ALS and also reversed paralysis in rats with Ischemic Spastic Paraplegia. Visit www.alsa.org/research for more information. 13


|

NEW ALS CLINIC ADVANCING CARE IN SOUTHWEST FLORIDA

Dr. William Carracino (center) examines ALS patient Eric Vartdal

New “Antisense” Experimental Therapy Clinical Trial Announced

(left) at the Lee Memorial ALS

A new experimental therapy using an approach known as antisense, in which a drug is designed to shut down the RNA (Ribonucleic acid) that is responsible for the production of disease-causing proteins, is being prepared for a clinical trial in people with the familial form of ALS later this year. The clinical trial follows research funded by The ALS Association through TREAT ALS (Translational Research Advancing Therapy for ALS), our research pipeline that funds and facilitates the development of treatments for ALS based on important laboratory findings. The research that resulted in the identification of this antisense drug was first funded by The ALS Association in 2003, and has been developed for the clinic through an academic/industry partnership. ALS Association-funded researchers Drs. Don Cleveland, Richard Smith, and Timothy Miller, in partnership with Isis Pharmaceuticals in Carlsbad, Calif., initiated experiments in a rat model of ALS to determine whether reducing the amount of SOD1 protein may be beneficial in treating the disease. Initial research in rat ALS disease models demonstrated that the antisense drug inhibited the mutant SOD1 protein, resulting in prolonged life of the rats. Time of treatment for the rats was near onset of symptoms, reflecting the scenario for actual pa-

The News-Press)

tients who often have definite and even advanced signs of motor neuron loss by the time of ALS diagnosis. Researchers hope that this therapeutic approach will provide a similar therapeutic benefit in people with familial ALS due to mutations in the SOD1 protein. The antisense approach could also prove valuable in treating other neurological disorders, such as Huntington’s disease. Together with the biotech company Isis, led by Dr. Frank Bennett, Dr. Timothy Miller, Dr. Merit Cudkowicz and Dr. Richard Smith, the team has conducted the necessary research to submit an Investigational New Drug Application with the Food and Drug Administration (FDA) to test this novel approach in people with ALS. The application was recently submitted to the FDA. The ALS Association will provide funding for the clinical trial. “This achievement, and the process of taking an idea from the laboratory to the clinic, underscores the importance of The ALS Association’s TREAT ALS pipeline and the financial support provided to the investigators,” commented Senior Vice President, Research and Development Lucie Bruijn, Ph.D. “The development of new treatments is an extremely challenging and costly process. It is only through the support of our generous donors that this type of research is made possible.”

If you have familial ALS through the identified gene, SOD1, you may be eligible for the “Antisense” clinical trial. People interested in learning more about the clinical study should contact the MGH Neurology Clinical Trial Unit at (877) 458-0631 or by email at mghneuroclinicaltrialsunit@partners.org 14

Clinic. Vartdal’s father Bob and wife Judi were also present for the visit. (Photo by Brian Tietz,

The ALS Association Florida Chapter is partnering with Lee Memorial Health System to bring advanced care to patients with ALS in Southwest Florida. On Saturday, September 12th a brand new clinic opened which is dedicated specifically to patients with ALS. The clinic is a welcomed addition to the community as patients living in the area have previously had to travel several hours to Miami, Jacksonville, or St. Petersburg just to find multidisciplinary ALS care. “There are over 100 patients living within a 60-mile radius of this new clinic, and that’s just the patients we know about. There could be many more,” said Nancy Baily, Director of Operations, ALS Association Florida Chapter. “There was a great need for a multidisciplinary ALS clinic on the Southwest Coast.” Clinics across the country, in partnership with The ALS Association, set the national standard for ALS-specialized care. ALS clinics are made possible through joint ventures with leading institutions across the country, like Lee Memorial Health Systems, and offer state-of-the-art clinical care in a supportive family-oriented atmosphere. Since pALS experience such a wide range of complex symptoms, clinics offer care from a team of For more information: Christine Bright, MSW 888-257-1717 ext 130 / cbright@alsafl.org

people specially trained to meet the needs of those living with ALS. The Lee Memorial ALS Clinic will coordinate the best of care from all health disciplines necessary for ALS patients and their families. Several months ago, ALS Association supporters and patients in the community began writing letters to the board of directors at Lee Memorial Health Systems, voicing the need for an ALS clinic in the area. Lee Memorial responded quickly to the appeals and began many months of thoughtful planning for the clinic. The special healthcare team at the Lee Memorial ALS clinic provides services to persons with ALS during a four-hour clinic. The team consists of a neurologist, nutritionist, occupational therapist, physical therapist, Florida Chapter social worker, speech pathologist, and respiratory therapist which evaluate each patient during a single visit. Persons with ALS who are interested in attending the Lee Memorial ALS Clinic must first schedule a consultation with a member of the neurology team. Clinics are held on the second Saturday of each month at The Outpatient Center at Plantation in Fort Myers. For consultation with a neurology team member: Florida Neurology Group / 239-936-3554 15


Upcoming Events December 6

Annual Fort Myers ALS Picnic Lakes Regional Park, Fort Myers, Fl

December 11

Quilt Raffle Drawing Purchase your tickets online today!

December 11

Central Florida Golf Classic Waldorf Astoria Golf Club, Orlando, Fl

January 3

Lou Gehrig Night with the Seminole County Naturals Historic Sanford Memorial Stadium Sanford, Fl

January 10

Lou Gehrig Night with the Lake County Black Bears Buddy Lowe Field at Pat Thomas Stadium, Leesburg, Fl

Support Groups Join us at an upcoming support group to find practical advice on day-to-day living with ALS and a safe place to express your concerns. Everyone is welcome. Boynton Beach Daytona-Ormond Beach Fort Myers Gainesville Jacksonville Leesburg Manasota Melbourne Naples

Ocala Orlando Pensacola Tallahassee * Tampa Treasure Coast/Stuart Weston Vero Beach

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

January 14

* The Tampa support group is changing

Tampa Walk Kick-Off Party Location TBD

locations! Join us next time at the Morsani Center for Advanced Health Care on the University of South Florida campus.

February 2

Urban Flats Wine Party Urban Flats, Downtown Orlando

February 6

Orlando Walk Kick-Off Party Orlando Shakespeare Theater

February 9

Follow us on the web:

Sarasota Walk Kick-Off Party Ed’s Tavern, Lakewood Ranch, Fl

February 20

Jacksonville Walk Kick-Off Party Seven Bridges Grille

News magazine layout and design by Dunn&Co.

NONPROFIT ORG US POSTAGE

3242 Parkside Center Circle Tampa, FL 33619-0907

PAID

TAMPA FL Permit No 2910


ALS Access December 2009