2700 SW Freeway #296 • Houston, TX 77098 • ph 713-626-7114 • fax 713-521-3964 • www.hapsonline.org • [email protected]
FEBRUARY 2015 Letter from the President in this issue As we begin our 41st year of serving the Parkinson community, I look back on 2014 with great pride on what we as the HAPS family accomplished together. HAPS had a banner year in 2014 as Welcome New HAPS Board 2-3 th Members we launched our 40 anniversary celebration. We continued the HAPS mission, established four defining decades ago, and Upcoming Educational Programs 3 furthered it boldly in 2014, experiencing many noteworthy successes. The list of achievements and milestones is long and New Parkinson’s Medications 4 could easily fill this space and beyond, but I will just list a few: HAPS Exercise & Support Insert Group Schedule Over 42,000 service hours were provided Nearly 2,000 exercise and support groups were presented Marathon Review 5 3,500 households received our monthly newsletter Welcomed the clients and members of Parkinson Foundation of Harris County Foundation and Corporate 6 into our organization Support Continued to expand the reach of our services to meet the growing number 2015 PAN Forum 6 of additional clients and their families Launched our innovative Parkinson’s Enrichment Program Contributions and Tributes 7 Honored 40 years of HAPS history
Our mission continues to be one of service and we describe our goal as seeking to “change the face of Parkinson’s.” In fact, we are accomplishing that every day by
providing innovative programs and comprehensive services that include education, advocacy, therapeutic exercise and support groups, enrichment programs, Mark your calendars 2015 HAPS Annual transportation, information and referral, case management, subsidized respite care Educational and emergency financial aid. These efforts address not only the needs of the Symposium individual with Parkinson’s, but the needs of caregivers and family members, too.
Saturday, May 2nd And we do all of this free of charge. As we take pride in our successes, we should recognize that these accomplishments are a result of the commitment of three groups. First, our talented and dedicated staff is second to none. With limited resources, they perform the hard labor day in and day out, keeping the programs running smoothly and efficiently. Second, with great energy and enthusiasm, our Board of Directors, Board of Advisors and Medical Advisory Board provide the leadership and inspiration to continue to move the organization forward. Finally, the foundations, corporations and individuals like you This publication is not intended to provide diagnosis or treatment. Always seek the who support and fund our mission, make all our efforts possible. advice of your physician or pharmacist with questions regarding medical It is a great privilege to be the President of HAPS and be a part of such a fine conditions or drug interactions. organization that does so much for so many. Join me as we continue our work to
To request permission to reprint content improve the lives of those affected by this disease. published in this newsletter, please contact the HAPS office at 713-626-7114 or [email protected]. HAPS Welcomes New Board Members Board of Directors
Joseph Y. “Joe” Ahmad is a partner in the Houston law firm of Ahmad, Zavitsanos, Anaipakos, Alavi & Mensing P.C., and is Board Certified in Labor and Employment Law. He primarily represents executives in employment-related litigation, including trade secret and non-compete cases. Joe has been recognized nationally as one of the best lawyers in his field and was elected to the prestigious American Board of Trial Advocates. He has been selected by his peers since 2003 as one of the "Best Lawyers in America" and was named "2015 Lawyer of the Year" in the Employment-Individual category in Houston. Joe has also been named to the Texas Super Lawyers list, the Texas Super Lawyers Top 100 in Houston since 2006, and the Texas Super Lawyers Top 100 in Texas every year but one since 2006. He and his wife, Hala, have twins.
Denise Bishop is the Stakeholder Engagement Specialist for Harris County Public Health and Environmental Services. Her previous experience includes more than 20 years of Houston news at News 92FM, Fox 26 Television and KTRH Radio, and seven years as the Senior Director of Communications and Marketing for the American Red Cross in Houston. Her career highlights include launching an all-news radio station, creating FOX 26’s first morning newscast and sports shows, and assembling the largest investigative reporting unit at that time in Houston television, which won numerous Emmy Awards and a Peabody Award. Denise attended Loyola University in New Orleans and graduated from the University of Florida. She is married to Bill Bishop who works for KHOU-TV and they have two sons.
Philip Francis is the Managing Principal for his commercial real estate consulting firm, Francis Advisors, LLC. He attended St. John’s School and graduated from Southern Methodist University in 2003. Philip also studied at Oxford University in Oxford, England and Fundación José Ortega y Gasset in Madrid, Spain. He has been aware of Houston Area Parkinson Society through his uncle and HAPS Board President, Mike Hendryx, and Godmother and HAPS Board Member, Leslye Weaver. Philip and his wife, Hilary, have been members of the Young Professional Host Committee for HAPS Annual Awards Events since in 2011. He has also been active in community service with board leadership and volunteer roles for numerous nonprofits. Philip and Hilary have three children—a three-year old child and one-year old twins.
Daphne Haskin is an Accounting Supervisor for Occidental Petroleum Corporation and graduated from McNeese State University in Lake Charles, Louisiana. She is also a Certified Public Accountant licensed in Texas and Louisiana. Motivated by her father’s diagnosis of Parkinson’s disease in his early 30’s, Daphne helped establish the Lake Charles based National Parkinson Foundation Southwest Louisiana & Southeast Texas in 2000 and served as the Treasurer for several years. She currently serves on the board in an advisory capacity. Although her father passed away in 2012, Daphne’s family is still actively involved in raising awareness for Parkinson’s. Daphne and her husband, Dennis, reside in Pearland with their children, Dennis, Jr. and Kennedy.
Erick Sandlin is a litigation associate with the law firm, Bracewell & Giuliani LLP. He was born and raised in Texarkana, Texas. Erick earned his Bachelor of Science degree from Texas A&M University. He also earned a Certificate in International Affairs from the Bush School of Government and a Juris Doctor from Baylor University, where he served as Editor-In-Chief of the Baylor Law Review. Prior to joining Bracewell & Giuliani, he served as a law clerk to the Honorable Priscilla Owen of the U.S. Court of Appeals for the Fifth Circuit. Erick is also an artist, focusing on contemporary abstract paintings using spray paint, which he shows in galleries around Houston. In 2014, he raised funding through his art for HAPS at an event inspired by his father who has Parkinson’s. Erick attends Ecclesia Church and lives in the Heights.
2 | HOUSTON AREA PARKINSON SOCIETY Board of Advisors
Greg Groogan is the Special Projects Reporter for Fox 26 Television. He graduated from the University of Texas Plan II Honors Program and broke into the television business immediately thereafter. Greg has received more than 150 journalism awards, including 26 Lone Star Emmy Awards. In 2010, the National Education Writers Association awarded Greg its first prize for beat reporting and the Houston Press Club honored him as Television Journalist of the Year in both 2010 and 2013. In addition to his numerous television and reporting honors, Greg is involved with various nonprofit groups. He has a number of close friends who live with Parkinson’s as well as a family member who was recently diagnosed. Greg is married to former FOX 26 reporter, Michelle Casas, and they have two children, Hannah and Garrett.
Join PDF for PD ExpertBriefing
More Than Meets the Eye: Vision Symptoms of PD
Parkinson’s Disease Foundation hosts their latest PD ExpertBriefing which you can join online or by phone
Tuesday, March 3, 2015, 12:00 PM - 1:00 PM CST
Presented by Daniel Gold, D.O., Assistant Professor of Neurology and Assistant Professor of Ophthalmology, The Johns Hopkins University School of Medicine To register, contact PDF at pdf.org or 1-800-457-6676
This series has been made possible by an educational grant from AbbVie Inc. and was designed in collaboration with HAPS, Michigan Parkinson Foundation, Parkinson Association of the Carolinas and Parkinson Association of the Rockies
Newly Diagnosed Education Program DBS Discussion Program
For those who have been diagnosed with Join the discussion and learn more about Parkinson’s disease within the last three years Deep Brain Stimulation as a treatment option for Parkinson’s disease
st Saturday, February 21 Wednesday, March 4th 8:30 am - 12:30 pm 6:15 pm - 7:30 pm First Colony Library Presented by 2121 Austin Parkway Sugar Land, TX 77479
Dr. Erin Furr-Stimming
Presented by Dr. Richard Simpson Registration is required. Dr. Shahin Shirzadi
Contact the HAPS office for more information at 713-626-7114 or [email protected] To register for this event, contact Todd Hewgley at 281-782-2937 or [email protected]
FEBRUARY 2015 HAPS HAPPENINGS | 3 FDA Announces two new Parkinson’s treatment options
2015 is off to an exciting start with the Food and Drug Administration (FDA) announcing the approval of two new Parkinson’s treatment options—DUOPATM and RYTARYTM. DUOPA™, developed by AbbVie, Inc., is a new approach to the delivery of carbidopa and levodopa as a treatment of motor fluctuations in people with advanced Parkinson’s disease. This treatment has been used in Europe since 2004 under the name Duodopa and was recently approved by the FDA as an orphan drug, a designation granted to products intended for the treatment of rare diseases or conditions affecting fewer than 200,000 patients in the U.S. In the advanced stages of Parkinson's disease, patients may begin to experience "off" time, or periods of poor mobility, slowness and stiffness. Additionally, in Parkinson's disease patients, the spontaneous emptying of the stomach becomes delayed and unpredictable, which can affect the timing of when orally administered medicines leave the stomach and are absorbed in the small intestine. DUOPA™, provides patients with the same active ingredients as orally-administered drug carbidopa and levodopa immediate release, but is delivered every day by a portable pump for 16 continuous hours in a suspension that goes directly into the small intestine via a surgically-placed tube. This type of administration is intended to bypass the stomach. In clinical trials, those who used DUOPA™ had two fewer hours of “off time” than those treated with immediate-release, oral levodopa/carbidopa pills. This treatment is a promising new option especially for those in later stages of the disease who are not candidates for Deep Brain Stimulation, but does come with some considerations. DUOPA™ requires that patients wear an external “box” in the belt region and individuals will require help from caregivers to manage the device, tend to the skin where the tube enters the body and coordinate medication refills. Most of the side effects are related to the delivery tube or the abdominal wall surgical site, including movement, knotting or clogging of the tube, and infections at the surgical site. It is uncertain as to when DUOPA™ will be available to people with Parkinson’s disease in the U.S. HAPS will be working with AbbVie, Inc. to provide more information and educational opportunities about DUOPA™ to the local Parkinson’s community in order to facilitate a better understanding of this treatment option and to help individuals with Parkinson’s engage in informed conversations with their neurologists about whether DUOPA™ is appropriate for them.
RYTARYTM, manufactured by Impax Phamaceuticals, is an extended-release oral capsule formulation of carbidopa- levodopa, for the treatment of Parkinson's disease and was designed to address one of the most significant unmet needs for patients living with Parkinson's disease, which is to reduce the amount of time during the day when their symptoms are not adequately controlled. RYTARYTM is not for use in patients using nonselective monoamine oxidase inhibitors (MAO) inhibitors.
RYTARYTM, which is expected to be available in four strengths in February, contains immediate release and extended- release beads in an oral capsule, with a specific amount of carbidopa and levodopa in a 1:4 ratio, and provides both initial and extended levodopa plasma concentrations after a single dose. This allows the medication effects to kick in immediately and then be maintained in the blood levels longer. RYTARYTM may be swallowed whole or, for patients who have trouble swallowing, the capsule may be opened and the beads sprinkled on applesauce and consumed immediately. In clinical trials, patients taking RYTARYTM experienced less “off time” and reported more “on time” without troublesome dyskinesias. Those taking RYTARYTM also noted improvement in their ability to move and complete daily tasks. These new options are welcome tools for physicians treating Parkinson’s and promising for those living with the disease. As always, these medications may not be for everyone. If you are interested in either of these medications, you should talk to your physician about the risks and benefits specific to your situation.
4 | HOUSTON AREA PARKINSON SOCIETY HAPS Heroes Lead the Charge to Conquer Parkinson’s
On January 17-18th, HAPS Superhero Squad laced up sneakers and sported hero shirts and capes for the 2015 Chevron Houston Marathon weekend. An amazing group of 200 HAPS walkers assembled and participated in the Saturday morning ABB 5K and almost 40 runners hit the Sunday half and full marathon course to raise awareness and conquer Parkinson’s disease. HAPS also shattered its previous fundraising record raising over $116,000 to date. HAPS thanks all of its heroes who helped make this our biggest and best Marathon yet. HAPS sends a special thanks to our Marathon Co- Chairs, Diana Rutherford and Dotti Visosky for fearlessly leading the way, our Sidewalk Squad corporate donor Wärtsilä and all our in-kind donors for their contributions. Stay tuned for a full wrap-up of the event in the March newsletter!
FEBRUARY 2015 HAPS HAPPENINGS | 5 FOUNDATION AND CORPORATE SUPPORT Houston Area Parkinson Society gratefully acknowledges the following Foundations and Corporations for their outstanding support of the organization in 2014. Through their generosity, they play a critical role in making the work we do possible as we fulfill our mission to improve the lives of those affected by Parkinson’s disease. Foundation Gifts The Brown Foundation, Inc. Huffington Foundation The Cullen Foundation Hurlbert Family Foundation Dallas Foundation Liatis Foundation The Ellwood Foundation Parkinson Foundation of Harris County Friedman-Grossman Family Foundation Payne Foundation George and Mary Josephine Hamman Foundation Arch and Stella Rowan Foundation The Hamill Foundation The Charles and Betti Saunders Foundation Herman Family Foundation Strake Foundation Albert and Ethel Herzstein Charitable Foundation Isla Carroll Turner Friendship Trust Houston Endowment Inc. Corporate Gifts Balance and Neurological Physical ExxonMobil Nicklos Drilling Company Therapy Garden Terrace of Houston Randall’s Baylor College of Medicine Gensler Shell Oil Beck Redden LLP Halliburton Teva Pharmaceuticals Belmont Village HealthSouth Rehabilitation Hospital Texas Mutual Insurance Company Boeing ECF Home Instead Senior Care Thorp Petroleum Bryan Calvin Smith Insurance Houston Methodist TIRR Memorial Hermann Calpine JPMorgan Chase Truist Chevron Kerrco Inc. TTI Home Health Elaine Turner Designs Kroger UCB, Inc. Enterprise Holdings Macy’s/Bloomingdale’s US World Meds EOG Resources Medtronic Wärtsilä
On Tuesday, March 3rd, National Ballet School of Canada, Houston Ballet Academy and Mark Morris Dance Group will host and live-stream a mini-series of three focused panels, each addressing thought-provoking themes related to the intersection of dance and Parkinson’s. Stay tuned for more information—and save the date!
2015 PAN Forum—come and make your voice heard!
Join HAPS social workers as they travel to Washington, DC March 23-25, 2015 to participate in the Parkinson’s Action Network’s PAN Forum. This three-day event brings Parkinson’s disease advocates—patients, family members, caregivers, patient support organizations and health care professionals—from regions throughout the country together to make a national impact. Advocates gather to learn the latest public policy and research related to Parkinson’s disease, network with others in their states and communities, and receive training to advance policy work on Capitol Hill and at home. Learn more about the PAN Forum and register today by visiting Parkinson’s Action Network at www.parkinsonaction.org or by calling the HAPS office at 713-626-7114.
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We are extremely grateful to the following individuals for their generous support of HAPS. Without the continued support of our donors, none of our programs or services would be possible.
IN HONOR
Jan and Elmer Boehm Bob Casey, Jr. Anna Petrites Carolyn Mata M. James Henderson Carole Updyke
Nina Brown Suggie and Shawn Casey Barb Raney Rochelle Goldberg Skibell Esther and Gary Polland Lin Raney Drees Shirley Brown's Birthday Ralph J. Culotta Robert Paul Ried Linda J. Burch George Collins Mr. and Mrs. Robert C. Ried Aubrey Calvin Mrs. Lillian De La Cruz Chuck Roe Carole Updyke R.C. De La Cruz, Jr. Carole Updyke Randi Carrabba’s Birthday Maureen P. Goddard Margaret Romeo Joyce Gilbreath Pro-Dec Products Inc. Michael Romeo Randi and Johnny Carrabba Mike Hendryx Dotti Visosky Jeanie Gibbs Lucinda Matthews Frances B. Ray Sandra Fishlock Tom Horton Mary Cruse Peggy and Bill Vlantes Linda J. Burch Jennifer Garcia
IN MEMORY
Fred Fallis Thomas Hickey Dr. Alice Speer Maury Meyers Marilyn Hilty Kirk Hickey Betty A. Speer Carolyn and Ron Bernell Raymond Franz Steve Kanaly Wallace Hutchinson Daniel Miano Joan Franz Virginia Kanaly Dallas Ives
Susan and Scott Holland Sue Hilderbrand Gracie Frick Mr. and Mrs. Leftwich Anonymous Louise and Stan Tabasso Bob Leftwich Marcel Millioud Robert Steele
Ettore Gianola Marguerite M. Millioud Christine Dubelbeiss George Lieberman Nancy C. O'Quinn Carolyn and Ron Bernell Alfred Plaschke H.D. Sullivan
Aileen Gordon Hannelore Plaschke Jo Sullivan Mildred Kerr Carolyn and Ron Bernell Carolyn and Ron Bernell Connie Raney Ralph Warner
Raymond E. Hankamer Lin Raney Drees Julie Warner August E. Macha Camille O. Hankamer Liz and Bernard Hlavinka Brian Warner Peggy Lee Wilburn Titt
James Hazelwood Ronald Maddox Nancy Henderson Dr. Jack Westmoreland Nancy Kauffman Lin and Ron Drees Jennifer Baird Simone Westmoreland
GIFTS
Jonathan Shear Madelon and Ben Guzzetta Judy and Albert Weycer Richard Nelson Donna P. Hoenes Desaline and Jose Dixon Barbara and Jack Spell Michael Koenig Walter Finger Linda and John Griffin Yolanda and Tracy Lewis Jeffrey Mills Vicie and Marvin Coleman Janet and Clarence Zaozirny Nancy and Robert Flatt Alfreda and William Elaine and David Hyatt Beverly and Ellis Rudy Cynthia Crellen Przybyla Ewing Werlein, Jr. Beth Johnson Mr. and Mrs. William Bartek John P. Calabro Jane and Dennis Hough Beverly and Charles Boydstun Ann Eutsler Fotios Lorentzatos Genevieve and C.M. Stephens Patricia Haynes Mary Anna and Walter Madden Agatha and Gus Brann Jo and Kent Felty Donna McBride Shiela Milch Deoprya Dayal Misir Lucy and John Aymond Scott Spencer Matt Carroll Anonymous Edith and Robert Zinn Judy and James Stover Robin Nichols
While we make every effort to be accurate and thorough, it is possible to accidently omit or misspell a name. Please contact the HAPS office with corrections.
FEBRUARY 2015 HAPS HAPPENINGS | 7 Houston Area Parkinson Society Board of Directors Board of Advisors
Mike Hendryx - President Chris Bell Marti McWhirter Greg Groogan Gabriel Zamora - Vice President/Treasurer Ron Bernell Ellin Grossman, EdD Quin McWhirter Leslye Weaver - Vice President/Secretary Nina Brown John E. Hankey W.O. Neuhuas III Aubrey Calvin Harriet Hart Malcolm Pettigrew Joe Ahmad Joiner Cartwright, Jr. Kamden Kanaly George Puig Denise Bishop Bob Casey Liz Lary Jeff Rosenberg Chris Brewster Rich Clifford Arthur Schechter Randi Carrabba Harriet Latimer Robert Cruikshank Joyce Proler Schechter Joan Cupic Dan Lauck Binky Stephenson Strom Philip Francis Meredith Cullen Anne Martin Jo Furr Frank Donnelly, Jr. Robert A. Martone John Strom Joyce Gilbreath Tom Ganucheau Medical Advisory Board Daphne Haskin Joshua Huss Richard K. Simpson, Jr., MD, PhD - Chair Rob Kerr Madhureeta Achari, MD Cindy Ivanhoe, MD William Ondo, MD Jim Nicklos Gerald Rideaux Leanne Burnett, MD Joseph Jankovic, MD Terry K. Satterwhite, MD Erick Sandlin Steve Croft, MD Joohi Jimenez-Shahed, MD Mya Schiess, MD Terry K. Satterwhite, MD Albert Fenoy, MD Eugene C. Lai, MD, PhD Desiree B. Thomas, MD Pamela Skaufel Stanley Fisher, MD Laura Marsh, MD Gage Van Horn III, MD Jim Thorp Erin Furr-Stimming, MD Greg McLauchlin, MD Ashwin Viswanathan, MD Michael Young Robert G. Grossman, MD Kimberly Monday, MD Michele York, PhD
Staff Anne Thobae - Executive Director Leann Randolph, LMSW - Social Worker & Advocacy Outreach Coordinator Kathleen Crist, LMSW - Director of Social Services & Program Development Celeste Harris, LMSW - Social Worker & Special Programs Coordinator Kelly Nicholls - Coordinator of Marketing & Communications Angelica Rodriguez - Coordinator of Therapeutic Programs