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Scientists Working to Develop Vaccine for Parkinson’s Disease SEPTEMBER 2010 Research a hope for millions with incurable condition Inside this issue HOUSTON - (Aug. 5, 2010) - Nina Brown, 68, and millions of others with a debilitating Parkinson’s Vaccine 2 neurological condition called Parkinson’s disease are counting on researchers for a cure. World Parkinson Congress 2 At The University of Texas Health Science Center at Houston (UTHealth), protein chemists are working to develop a therapeutic vaccine. New HAPS tai chi class 2

Upcoming Events 3 Parkinson’s disease is a chronic disorder that worsens over time and can rob people of HAPS Exercise & 4-5 their ability to perform everyday tasks. Named after the English doctor who described the Support Group Schedule condition almost 200 years ago, its symptoms often include tremors or shaking, slow Ask the Advocate 6 movements, stiffness in arms and legs, drooling, slurred speech and unsteadiness.

Contributions & Tributes 7 “We’re creating a vaccine to target a protein that accumulates in the brains of people with Parkinson’s disease,” said Rowen Chang, Ph.D., who is the professor leading the research project at the UT Health Brown Foundation Institute of Molecular Medicine for the Prevention of Human Disease (IMM). “If we can slow the protein buildup, I believe we will MAJOR ANNOUNCEMENT! also slow the deterioration of nerve cells tied to body movement.” The protein is alpha synuclein. Dance for Parkinson’s and People with Parkinson’s disease may appear to be fixed in their facial expressions, stooped forward in their posture and may even appear to be intoxicated to others because of

their postural instability. While there is no cure, the symptoms of Parkinson’s disease can Coming to The Woodlands November 2010 be treated effectively. Parkinson’s disease is the second most common of the progressive neurological diseases, affecting 1 percent of the population over the age of 60.

Brown, who was diagnosed in 1985 after experiencing balance problems, used to swat The printing and distribution of this newsletter was partially supported by tennis balls and take in traveling productions of Broadway shows. “I went from being able a grant from to walk, to using a cane, to using a walker, to now using a scooter,” said Brown, who lives in Bellaire, Texas, and has been married to Joe Brown for 48 years.

“We estimate that there are about 19,000 people with Parkinson’s disease in the greater

Houston area,” said Kathleen Crist, director of social services and program development This publication is not intended to for the Houston Area Parkinson Society, a nonprofit social service organization. “For every provide diagnosis or treatment. Always person with it, there are also family members affected.” seek the advice of your physician or pharmacist with any questions regarding medical conditions or drug Parkinson’s disease has been linked to cell death in the substantia nigra, which is interactions. responsible for modulating movement and produces a major brain chemical messenger called dopamine. Dopamine directs the signals that allow people to control their To request permission to reprint content movements. For years, vaccines have been used to protect people from diseases like published in this newsletter, please contact the HAPS office at 713-626-7114 or rubella and measles by stimulating their immune systems. So, why not develop a [email protected]. therapeutic vaccine for Parkinson’s disease? Continued page 2 Page 2 HAPS Happenings

Parkinson’s Vaccine continued from page 1 When a person gets vaccinated, he or she is injected with a tiny amount of an agent linked to a disease, said Chang, who is collaborating on the project with UTHealth researcher and assistant professor Chuantao Jiang, M.D., Ph.D. As soon as the immune system recognizes this agent, it begins to produce antibodies to attack it. The agents that trigger this process are called immunogens.

Building on pre-clinical vaccine research by others demonstrating that reducing alpha synuclein buildup also reduces nerve damage, Chang and Jiang have developed an approach that they believe will be more effective in reducing alpha synuclein levels and therefore provide a more effective form of Parkinson’s disease therapy. Their work is supported by a grant from The Michael J. Fox Foundation for Parkinson’s Research, founded by Emmy Award-winning actor Michael J. Fox, who was diagnosed with Parkinson’s disease in 1991.

Chang and Jiang, who work in the UT Health Center for Protein Chemistry, have developed a vaccine and are in the process of testing its safety and effectiveness in a mouse model that expresses the human alpha synuclein protein.

The first part of their study involved a comparison of three different immunogens. “We have found a highly promising immunogen that may prevent the alpha synuclein aggregation,” Jiang said. The next step is gauging the effects of the immunogen in a mouse model. If the immunogen works in mice, clinical trials could be in the offing, Chang said.

Other Parkinson’s disease research underway at UTHealth includes a clinical study designed to aid in the early diagnosis of the disease, which scientists believe starts long before the onset of impaired motor skills. Mya Schiess, M.D., professor and Adriana Blood Chair in Neurology at the UTHealth Medical School, and colleagues are trying to build a profile of measures that could be used to predict Parkinson’s disease development. The scientists are searching for biological substances and physiological phenomena (biomarkers) tied to the disease, which could be used in combination with other measures, such as a reduction in the ability to smell, to diagnose the disease. The study includes people with Rapid Eye Movement Sleep Behavior Disorder, who are at increased risk of developing Parkinson’s disease. For information on the study, call 713.500.7073.

“I hope a cure for Parkinson’s will be forthcoming in my lifetime,” said Nina Brown, who describes her battle with Parkinson’s disease in a video titled “Hope.” “If not, it is my hope that it will be there for future generations.” Joe Brown added, “The answers won’t come immediately. But when they do, they will change mankind.”

This article was reprinted in its entirety with permission from Rob Cahill, author, and The University of Texas Health Science Center at Houston (UTHealth)

SEPTEMBER 28—OCTOBER 1, 2010

GLASGOW, SCOTLAND UK

The countdown has begun—the 2nd World Parkinson Congress (WPC) is only weeks away. As one of 157 organizational partners from 45 countries, HAPS is excited to share this experience with thousands of others around the world. HAPS Executive Director Anne Thobae and Director of Social Services and Program Development Kathleen Crist will be attending this year’s conference and bringing back lots of information and ideas that relate to all areas of Parkinson’s to share!

As part of this year’s event, WPC hosted a video competition to help raise awareness about Parkinson’s. The purpose of the competition was to put a face on the disease and to have a little fun at the same time. Nearly 50 people—including those with PD, caregivers, friends and researchers—from 15 countries submitted videos. The videos portray how they are staying strong in the face of Parkinson, why they won't let PD stand in their way or how they are researching a cure, they and show what others are doing to make a difference for people living with Parkinson's. You can go online to view these submissions and the winning videos at www.worldpdcongress.org. Page 3

Newly diagnosed education program

For those who have been diagnosed with Parkinson’s disease within the last three years

Saturday, October 9th 8:30 am —1 2:30 pm Presented by Dr. Joohi Jimenez-Shahed Special thanks to San Jacinto College Central Department of Theatre and Film, Dr. David LeMaster and Dr. Jerry Ivins for contributing the proceeds from the sold-out benefit performance of “Shaken” on September 3rd to HAPS. HAPS PD EXERCISE AND SUPPORT GROUPS

CENTRAL

PD & DEMENTIA/ Support group for caregivers of For more information 4th Monday of month LEWY BODY DEMENTIA persons with Parkinson’s and Kathleen Crist, LMSW 10:30 am—12:15 pm dementia or Lewy Body Dementia 713-626-7114 CAREGIVER SUPPORT GROUP

Mondays For more information and to 2:00—3:00 pm W. Gray Adaptive Recreation Center request participant paperwork WATER EXERCISE 1475 West Gray Alfonso Hernandez Thursdays Houston, TX 77019 713-520-8670 11:00 am—12:00 noon

TIRR For more information Tuesdays EXERCISE 2455 S. Braeswood Alfonso Hernandez 3:30—4:30 pm Houston, TX 77030 713-520-8670 Memorial Dr. Presbyterian Church For more information SPEECH & Wednesdays 11612 Memorial Dr. Room 102 Alfonso Hernandez 2:30—4:00 pm EXERCISE Houston, TX 77024 713-520-8670 For those younger than 55 with For more information YOUNG ONSET 2nd Wednesday of month Parkinson’s disease Celeste Harris, LMSW 7:00—9:00 pm SUPPORT GROUP 713-313-1621

W. Gray Adaptive Recreation Center For more information Tuesdays TAI CHI 1475 West Gray Alfonso Hernandez 10:30—11:30 am Houston, TX 77019 713-520-8670 W. Gray Adaptive Recreation Center For more information Wednesdays TANGO 1475 West Gray Kathleen Crist, LMSW 1:00—2:15 pm Houston, TX 77019 713-626-7114

Ballet Academy For more information Mondays DANCE 1921 W. Bell Kathleen Crist, LMSW 12:45—2:00 pm Houston, TX 77019 713-626-7114 Ballet Academy For more information 2nd Monday of month SINGING 1921 W. Bell Kathleen Crist, LMSW 12:00—12:30 pm Houston, TX 77019 713-626-7114

W. Gray Adaptive Recreation Center For more information Thursdays EXERCISE 1475 West Gray Alfonso Hernandez 9:30—10:30 am Houston, TX 77019 713-520-8670

4th Tuesdays For those who have completed Deep For more information POST DBS SUPPORT GROUP of every other month Brain Stimulation Surgery Celeste Harris, LMSW 6:00—7:30pm 713-313-1621

Memorial Dr. Presbyterian Church For more information Fridays TAI CHI 11612 Memorial Dr. Room 102 Alfonso Hernandez 11:00 am—12:00 noon Houston, TX 77024 713-520-8670 SOUTH

Mondays Clear Lake Rehab Hospital For more information EXERCISE & Speech 3:30—4:15 pm 655 E. Medical Center Blvd. Alfonso Hernandez SPEECH Exercise 4:15—5:00 pm Webster, TX 77598 713-520-8670

Clear Lake Rehab Hospital For more information WATER EXERCISE Please Call 655 E. Medical Center Blvd. Alfonso Hernandez Webster, TX 77598 713-520-8670 Clear Lake Rehab Hospital For more information CAREGIVER SUPPORT GROUP 3rd Monday of month 655 E. Medical Center Blvd. Celeste Harris, LMSW Webster, TX 77598 713-313-1621

St. Andrew’s Episcopal Church For more information Wednesdays EXERCISE 2535 E. Broadway, FM 518 Alfonso Hernandez 4:00—5:00 pm Pearland, TX 77581 713-520-8670 EAST

Tuesdays Bay Area Rehabilitation Center For more information WATER Thursdays 3513 Decker Drive Alfonso Hernandez EXERCISE 2:00—3:00 pm Baytown, TX 77520 713-520-8670 ALL GROUPS ARE FREE OF CHARGE—PLEASE VISIT THE WEBSITE AT WWW.HAPSONLINE.ORG OR CALL TO CONFIRM GROUP TIMES AND LOCATIONS

SOUTHEAST

Tuesdays Kindred Hospital Bay Area For more information SPEECH & Speech 1:30—2:00 pm 4801 E Sam Houston Parkway Alfonso Hernandez EXERCISE Exercise 2:00—3:00 pm Pasadena, TX 77505 713-520-8670 SOUTHWEST

First United Methodist Church For more information Mondays EXERCISE 1220 FM 1092 Alfonso Hernandez 10:00—11:00 am Missouri City, TX 77459 713-520-8670

Tuesdays St. Phillips Methodist Church For more information SPEECH & Exercise 2:00—2:45 pm 5501 Beechnut Room 104 Alfonso Hernandez EXERCISE Speech 2:45—3:45 pm Houston, TX 77096 713-520-8670

Memorial Hermann SW Houston For more information PROGRESSIVE SUPRANUCLEAR 3rd Saturday of month Prof Building II - Learning Center B Karen Kennemer 1:00 pm PALSY SUPPORT GROUP Hwy 59 at Beechnut Houston 77074 281-358-2282 WEST

Tuesdays 1st United Methodist Church of Katy For more information SPEECH & Speech 5:20—6:05 pm 5601 5th Street Room 111 Alfonso Hernandez EXERCISE Exercise 6:05—6:50 pm Katy, TX 77493 713-520-8670

1st United Methodist Church of Katy For more information CAREGIVER SUPPORT GROUP 3rd Tuesday 5601 5th Street Room 107 Celeste Harris, LMSW Katy, TX 77493 713-313-1621 NORTHEAST

First United Methodist Church of Humble For more information EXERCISE Please call 800 East Main Alfonso Hernandez Humble, TX 77338 713-520-8670 NORTH

Reliant Rehab Hosp. N Houston For more information WATER Mondays 117 Vision Park Blvd. Alfonso Hernandez 12:00 noon—1:00 pm EXERCISE Shenandoah, TX 77384 713-520-8670

Reliant Rehab Hosp. N Houston For more information Tuesdays SPEECH 117 Vision Park Blvd. Alfonso Hernandez 2:00—2:45 pm Shenandoah, TX 77384 713-520-8670

1st, 3rd, 5th Thursdays Woodlands United Methodist Church For more information EXERCISE & 1:30—2:30 pm 2200 Lake Woodlands Drive Alfonso Hernandez TAI CHI 2nd, 4th Thursdays The Woodlands, TX 77380 713-520-8670

Woodlands United Methodist Church For more information CAREGIVER SUPPORT GROUP 1st Thursday of month 2200 Lake Woodlands Drive Kathleen Crist, LMSW The Woodlands, TX 77380 713-626-7114

NORTHWEST

Tomball United Methodist Church For more information Fridays TAI CHI 1603 Baker Drive (Faith Building) Alfonso Hernandez 11:00—12:00 noon Tomball, TX 77375 713-520-8670

Tomball United Methodist Church For more information CAREGIVER SUPPORT GROUP Please call 1603 Baker Drive (Faith Building) Celeste Harris, LMSW Tomball, TX 77375 713-313-1621

Foundry—A United Methodist For more information Thursdays Congregation Alfonso Hernandez SPEECH 10:00—11:00 am 8350 Jones Road (Scout Building) 713-520-8670 Houston, TX 77065

2nd Wednesday of For individuals with PD between age For more information CROSSROADS GROUP every other month 55 and 70. Celeste Harris, LMSW 7:00—9:00 pm 713-313-1621 Page 6 HAPS Happenings

Q: Can you explain the recent court ruling temporarily halting federal funding for embryonic stem cell research?

A: On Monday, August 23, 2010, a U.S. district court issued a preliminary injunction stopping federal funding of human embryonic stem cell research. U.S. District Judge Royce Lamberth granted the injunction, ruling in favor of the doctors who filed suit against the National Institutes of Health (NIH) on the basis that they would likely prevail because U.S. law blocks federal funding of embryonic stem cell research if the embryos are destroyed. Key to the case is the so-called Dickey-Wicker Amendment, which Congress adds to budget legislation every year. It bans the use of federal funds to destroy human embryos. In view of that, the suit against the NIH argues that the current administration's policy which allows the use of certain human embryonic stem cells in research, violates U.S. law by taking funds away from researchers seeking to work with adult stem cells which does not involve the destruction of an embryo. Dr. James Sherley of Boston Biomedical Research Institute and Theresa Deisher of Washington-based AVM Biotechnology, who both work with adult stem cells and oppose the use of human embryonic stem cells, filed the original suit saying the guidelines of the current policy violate the law and would harm their work by increasing competition for limited federal funding. Until the discovery of human embryonic stem cells in 1998, this was not an issue for the NIH. Since that time, the field of embryonic stem cells has been highly controversial because the research process, in most cases, involves destroying the embryo, typically four or five days old, after removing the stem cells. These blank cells can then become any cell in the body. Some scientists believe embryonic stem cells hold more promise than adult stem cells in treating many diseases and disabilities, such as Parkinson’s, because of their potential to develop into various cell types in the body. In 2001, a law was passed by Congress and enacted by President George W. Bush allowing federal research money to pay for work done using only a few batches of the embryonic stem cells. At the time, many stem cell researchers objected, saying these limitations would negatively impact and set back this research, arguing that federal funding is the cornerstone of such basic biological research. And not enough was being done in privately funded labs, leaving a gap in critical research. In 2009, President Obama issued an executive order overturning that decision, adding definition to the guidelines set forth in 2001. Within the new guidelines, the NIH oversees a careful process for deciding which batches of human embryonic stem cells can be used by federally funded researchers. The new guidelines do not allow the use of federal dollars to create the embryonic stem cells, but do allow researchers to work with them if they are made in a private labs. The August 2010 ruling temporarily stops the federal funding of embryonic stem cell research while the lawsuit proceeds through the legal system. However, on September 9, 2010, the DC Court of Appeals issued a stay of the preliminary injunction halting federal funding for human embryonic stem cell research. It would appear that the stay is only in place while the full arguments about the request for a stay of the preliminary injunction are heard in the Court of Appeals, but for the time period that it takes for this next phase of the case, the injunction is no longer in place against NIH and funding can continue. The plaintiff’s response to the NIH’s appeal is due on the 14th of September and the Department of Justice, representing NIH, will then reply to that on the 20th of September.

Stay tuned as this decision plays out in the courts...

We are extremely grateful to the following individuals for their generous support of HAPS.

GIFTS IN HONOR

Mr. George A. Bourgeois III Dr. and Mrs. Gary Sizenbach Michael F. Kingman Mr. and Mrs. George A. Bourgeois, Jr. Rebecca and Peter Neisig Texas Mutual

Linda and Robert Williams Suzanne McReynolds Howard Derrickson Nina and Frank Bayer Ronald Rosenhagen Abigail Derrickson Janet McGinn

Krissy Richmond and Kathleen Crist, LMSW Georgene Brandon

IN MEMORY

Alfred Kubiak Dorothy Kelly McGee Mary Folloder Hannelore Plaschke Sandra and Robert Stephens Linda and Herbert Lesser Richard Estrada Suzanne and Bill Howell Kay and Joel Levy Bernadette and Sonny Tydlacka Patty and Bob Cruikshank Maxine and Herman Lapin Mary and Andy Gibson Carole and Bruce Bilger Cheryl and Haran Levy Karen and Randy Kominczak Robert J. Fumagalli Carol and Barry Goodfriend Deborah and Mark Wisnoski Rita and George Gaines Geraldine and Jay Karkowsky Paige and John Elway Raphael Taylor Rici and Harold Miller Sheri and Robert Fleishman Sylvia and Morris Schultz Stephanie and Brady Klein Dorothy and Albert Krafcheck Eleanor Bronkema Susan and Richard Harris Lynn and Darryl Edelman Keith Higdon Cordelia Cummings Rochelle and Max Levit Family Jeanelle Waldrop Family Lee and Milton Levit Family Claire and Tony Cucolo Elaine and Melvin Kapell Fran and Abe Friedman Ellyn Roof John Wombwell Sandra and Joseph Kirk Joy and Lawrence Ramaekers Evelyn Franz The Gale Family Linda Rubenstein Adam Schiller Mary Donovan Juli and Henry Dewar Beth and Lee Schlanger Dr. Marvin Chernosky Cecil C. Conner, Jr. Marian and Jim Bishop Jacqueline Woike Betty and Barry Wood Mary Nommensen Benjamin and David Kay Faye and Herbert Lum Lynn and Bill Berryman Linda and Jay Herson Jack E. Little, Jr. Barbara and Edwin Hess Mr. and Mrs. Samuel C. Judge Joan and John McGee Vivian and Tom O’Leary Toni and Harry Watson Sue McMurrey André Molnar Ann and Paul Pigue Judge Hal DeMoss and Judy DeMoss Frank Bayer Robert Beamon Weinstein Tippetts and Little LLP Karen Stroman Lisa Trell Allegiance Bank June A. Dyke Robert Laurenzano Frances and Bob Wolter John Mark Buck Sandra Kruse Mrs. John Wildenthal Beverly Hornsby Cindy Kuzma Walta and James Smith Mary Helen Cook and Scott Spencer Jay Tyler Janet and Bob Campbell John Mattern Patricia and David Dewhurst Mitsubishi International Corporation Becky and Greg Copeland Ronald S. Ray Louise Jamail Mr. and Mrs. Joe Laughlin Mr. and Mrs. Thomas Stinerson Julie and William Jordan Rose Peterson Mary and Roy Cullen Maureen A. Coleman Ruth Hager Vickery and Harold Hager Clelia and Richard Sonntag Eleanor and Gregory Ray Karen and James Chenoweth Nancy and Gary Glesby Houston AreA PArkinson society Board of Directors President - Ellin Grossman, Ed.D. Vice President/Secretary - Nina Proler Brown Vice President/Treasurer - Ron Bernell Joe A. Brown Dick Gregg, Jr. Dan Lauck Pamela Skaufel Robert Casey, Jr. Mary Hart Quin McWhirter Binky Stephenson Strom Meredith Cullen Michael Hendryx Marti McWhirter John Strom Frank Donnelly, Jr. Rob Kerr Patti Murphy Gabriel Zamora Ted Gilbreath Eugene C. Lai, MD, PhD George Puig Kathy Grady Liz Lary Richard K. Simpson, Jr. MD, PhD Advisory Board of Directors Chairman - Aubrey Calvin Chris Bell Virginia Elverson Anne Martin Marion Rosenwald June Bowen John E. Hankey Robert A. Martone Terry Satterwhite, MD Leanne Burnett, MD Harriet Hart W.O. Neuhuas III Arthur Schechter Robert Cruikshank M. Sneed Lary Malcolm Pettigrew Joyce Proler Schechter Roy H. Cullen Harriet Latimer Jeff Rosenberg Koyne D. Smith Staff Executive Director - Anne Thobae Director of Therapeutic Programs & Community Outreach - Alfonso Hernandez Director of Social Services & Program Development - Kathleen Crist, LMSW Associate Director of Social Services - Celeste Harris, LMSW

HAPS HAPPENINGS is published monthly by Houston Area Parkinson Society Editor – Nina P. Brown