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Parkinson Voice Project

A 501(c)(3) Nonprofit Organization

IN 1999, I created The LOUD Crowd®

which met monthly in my dining room. Atthat time, I didn’t know much about the

nonprofit sector; I just knew that people withParkinson’s were losing their voices and thatI had the skills to help them. It was a frus-trating time because I knew Parkinsonianshad the capability to not only regain thestrength of their voices, but they couldmaintain them too. I also knew that patientswere ending up with feeding tubes anddying of aspiration pneumonia and thatthese swallowing issuescould be minimized withquality voice treatment.

Since Parkinson VoiceProject was formed, we’vebeen a “good” organiza-tion. Our mission is clearand our services are solid.However, in 2013, a majorshift has occurred. I feel it.If you are a LOUD Crowdmember or a supporterwho has been involvedwith the organization forthe past several years, youprobably recognize it aswell. In Jim Collins’ book,Good To Great, he de-scribes an image of someone trying to geta huge, heavy flywheel—a massive metaldisk mounted horizontally on an axle—to start moving fast. At first, the flywheelinches slowly forward as it is pushed withgreat effort. With persistence, the flywheelcompletes one entire turn. Then, it beginsto move a bit faster. With continuous effortand drive, pushing in a consistent direction,the flywheel builds up speed until… finally…breakthrough! The momentum kicks in andthe flywheel hurls forward. The flywheelimage describes what it is like when compa-nies shift from “good” to “great.”

The momentum at Parkinson Voice Project isbuilding. We’ve been pushing forward forfourteen years and finally, we’re getting readyto “break through.” In this annual report, youwill read about the amazing accomplish-ments this organization has achieved thisyear, including remodeling a new, largertreatment facility, conducting research, andtraining speech-language pathologists fromaround the United States.

As we continue our mission of preservingthe voices of those with Parkinson’s,

we invite you to join us onthis special journey. Help us push our “flywheel” forward. As our organiza-tion becomes great, it willbe those living with Parkin-son’s, as well as their family,friends, and co-workers,who will benefit from ourhard work and determina-tion. Throughout the coun-try, voices will be savedand lives will be improved.

Message from the CEO

The momentum at

Parkinson Voice Project

is building.

We’ve been pushing

forward for fourteen

years and finally, we’re

getting ready to

“break through.”

Leadership

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Policy Governance Model®

Parkinson Voice Project’s Board of Directors utilizes the“Policy Governance Model” as its means for leading theorganization. Policy Governance is a groundbreakingmodel of governance designed to empower boards tofulfill their obligation of accountability for the organiza-tions they govern. The model enables the board to focuson the larger issues; to delegate with clarity; to controlmanagement’s job without interfering; to rigorously evaluate the accomplishments of the organization; andto truly lead its organization.

Board Leader of the Year

Bart Bartholomew, Parkinson Voice Project’s founding (andcurrent) Board President has been selected as a finalist bythe Dallas Center for Nonprofit Management for “BoardLeader of the Year.” The winner will be announced at theCenter’s “Night of Light” Gala on November 14th.

Board Membership

If you are interested in being nominated as a potentialBoard Member for Parkinson Voice Project, please e-mailBart Bartholomew at contact@ParkinsonVoiceProject.orgor call (469) 375-6500. Board Members are expected to follow the Policy Governance Model, attend fourmeetings a year, contribute financially, and have variedbusiness and life experiences that will help ParkinsonVoice Project fulfill its mission.

Board of DirectorsBart Bartholomew

Bob Brown

Samantha Elandary

Pat Garrett

Graham Geary

Susan Hartin

Roger Hirl

Forshey Hoobler

Monty Huffington

Teresa Lettieri

Cherie Mahaffey

Bill McFarland

Angela Robb

Karl Robb

Ginny Sillers

Mike Swanson

Lynn Wagner

Honorary DirectorsNancy Clements Seay

Irvin L. Levy

Medical Advisory BoardDaniel R. Boone, PhD, CCC-SLP

Shilpa Chitnis, MD, PhD

Elmyra Encarnación, MD

Waleed H. El-Feky, MD

Richard Fulbright, PhD

Dr. John Harney, MD

Norma B. Melamed, MD

Padraig O’Suilleabhain, MD

Elizabeth Peckham, DO

Madhavi Thomas, MD

Gary L. Tunell, MD

Staff

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Samantha ElandaryMA, CCC-SLPFounder and CEO

Janice PattersonVice President of Financeand Administration

Kay D. WileyMS, CCC-SLPDirector of ClinicalResearch andAdvancement

Jennifer Cody MS, CCC-SLPSpeech-LanguagePathologist

Pamela Cogburn MS, CCC-SLPSpeech-LanguagePathologist

Elanor SchiffmannMS, CFY-SLPSpeech-LanguagePathologist

Beth KreegerPatient Assistant

Ceil PajdaPatient Liaison

Susan LarkinPatient Liaison

Diana FosterExecutive Assistant

Mary BurkertFinance Assistant

Glynda FullerOffice Assistant

Ashlee McBurnettOffice Assistant

Hayley RuffnerOffice Assistant

Amy MoganMarketing andDevelopment Assistant

Marianne ShihMarketing andDevelopment Assistant

Parkinson Voice Project Staff 7 Full-time; 9 Part-time

MissionTo preserve the voices of individuals with Parkinson’s and related neurological disorders through intensive voice therapy,follow up support, research, education, andcommunity awareness.

Vision To collaborate with other compassionatespeech-language pathologists to replicate ourmodel program so that patients throughoutthe United States will have access to intensivevoice therapy coupled with follow-up support.

Research

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ResearchThere are three independent research studies currently beingconducted on Parkinson VoiceProject’s SPEAK OUT!® and LOUDCrowd® programs. The PrincipalInvestigator of these studies isJune Levitt, Ph.D., CCC-SLP;

Assistant Professor, Department of Communi-cation Sciences and Disorders, Texas Woman’sUniversity.

Research Study #1The Efficacy of SPEAK OUT!® and LOUDCrowd® Voice Therapy programs forParkinson’s Disease

Twenty-two participants are currently enrolledin this study. Subjects’ voices are evaluated fourtimes – pre-SPEAK OUT!, post-SPEAK OUT!,four weeks post-LOUD Crowd, and then eightweeks post-LOUD Crowd. Subjects are evalu-ated off medications.

Preliminary data has found that loudness of theparticipants’ voices increased by 24%. Duringspeech production, participants’ mouth open-ing is estimated to have increased by 28%.Participants’ perception of his/her voice and itsimpact on social life increased by approxi-mately 18%; participants’ perception of thephysical aspect of their voice increased by approximately 27%.

Research Study #2The Efficacy of SPEAK OUT!® VoiceTherapy program for Parkinson’s Disease:12 sessions/2 weeks

The purpose of this study is to determine if it ispossible for participants to achieve the sameresults of the 4-week SPEAK OUT! program ina 2-week period of time. These subjects do nothave access to The LOUD Crowd. One subjecthas completed this protocol so far.

The subject’s voice was evaluated pre-SPEAKOUT!, post-SPEAK OUT!, and then eight weekspost-SPEAK OUT! Data revealed that loudness ofprolonged vowels (ah, ee, oo) increased approx-imately 15.6%. During speech production, theparticipant’s mouth opening increased by ~37%.The participant’s perception of his voice and itsimpact on social life increased by approximately

21.6%; the participant’s perception of the physicalaspect of his voice increased by approximately22.4%. However, when the participant was re-evaluated ~ two months after SPEAK OUT!, hisperception of his voice and its impact on sociallife decreased from the post-SPEAK OUT! scoresby 20%; and the participant’s perception of thephysical aspect of his voice decreased from postSPEAK OUT! by 25% – worse than before treat-ment. This is interesting because the patient hadno access to The LOUD Crowd.

Research Study #3The transfer Effects of SPEAK OUT!® andLOUD Crowd® Voice Therapy programs toSwallowing Behaviors

The research design for this study was recentlyapproved by Texas Woman’s University’s Internal Review Board. DiagnosTEX, a mobileprovider of comprehensive swallowing evalua-tions will be conducting all the Modified Bar-ium Swallow Studies. This research will evaluatethe swallowing behaviors of twenty-four subjects. Twelve subjects will receive theSPEAK OUT! and LOUD Crowd Voice Therapyprograms, and twelve subjects will be the “con-trol group” who do not receive SPEAK OUT! or The LOUD Crowd. Subjects will each havefour separate Modified Barium Swallow Stud-ies. Those subjects that will receive the voicetherapy will be evaluated pre-SPEAK OUT!,post-SPEAK OUT!, four weeks post-LOUDCrowd, and then eight weeks post-LOUDCrowd. The control group will be evaluatedfour times over a 16-week period.

Special Professional Recognition• Parkinson Voice Project’s CEO (SamanthaElandary) and the Director of Clinical Researchand Advancement (Kay D. Wiley) were both selected to present at the National Conventionof the American Speech-Language-Hearing As-sociation and the State Convention of the TexasSpeech-Language-Hearing Association (TSHA).

• Parkinson Voice Project was selected to pres-ent a poster at the World Parkinson’s Congressin Montreal, Canada. The poster was selectedfor a special “poster tour,” involving only 25%of the poster submissions.

June Levitt,Ph.D., CCC-SLP

Programs

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SPEAK OUT! Workshops for Speech-Language PathologistsIn June 2013, Parkinson Voice Project began offeringquarterly workshops to train speech-language patholo-gists from around the country in our SPEAK OUT! andLOUD Crowd methods. So far, Parkinson Voice Project hastrained forty-five speech-language pathologists fromeleven different states.

In 2012, the Parkinson Foundation of Oklahoma initiatedtheir “SPEAK OUT! Oklahoma” program. Since its incep-tion, the organization has provided SPEAK OUT! therapyto over 140 patients at three different hospitals and facilitatesfour LOUD Crowd groups each week.

“This is an awesomefacility and theenthusiasm and passion,along with the obviousprofessionalism, was atotal inspiration to me.The workshop was veryeffective and having theopportunity to practicewith the patientsattending the programwas very useful. The interaction anddiscussions after thepresentations and videoswas very satisfying.”

Maria K., Washington, D.C.

Program

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Graduate Student Intern ProgramAs part of an ASHA-accredited university’s mas-ter’s degree program, students must demonstratevarious clinical competencies and clock 400 hoursof experience with a variety of communication dis-orders. Students must obtain these experiences in“real world” clinical settings. Certified speech-language pathologists at Parkinson Voice Projectgive back to the speech pathology profession by providing supervision and mentorship to graduate students. Graduate students from accredited universities are invited to interview first, and if accepted, spend asemester shadowing, observing, and ultimately conducting individual andgroup therapy with Parkinson Voice Pro-ject’s patients. Students are supervised100% of the time and patients givetheir permission to have a studentassist them in their treatmentprocess. Word has spread amongst

the graduate programs that an in-ternship at Parkinson Voice Projectprovides extensive training for astudent’s future as a professional,and as a result, there are moregraduate students interested in aninternship than available positions.As Parkinson Voice Project expandsits national outreach, it is anticipatedthat graduate students outside ofTexas universities will be interestedin these selective internships.

Parkinson’s Information SessionsEach month, Parkinson Voice Project hosts free“Parkinson’s Information Sessions,” where anyone interested in learning more about thedisorder may attend. The lecture and videopresentation features information about Dr.James Parkinson, the cardinal symptoms ofParkinson’s and how the disorder is diagnosed,the use of intention in treating Parkinson’s, as wellas information about the associated speech

and swallowing deficits. Typically,30-40 people attend these ses-sions each month.

Two of our staff, Jennifer Cody (left) and Susan Larkin, began their professional relationshipwith Parkinson Voice Project as interns.

Patient Treatments Conducted(July 2012 – June 2013)

2,394 Individual Voice Sessions350 LOUD Crowd Voice Groups

32 LOUD Crowd Singing Groups

30 LOUD Crowd Care Partner Groups

Events

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Grand Opening of New Voice ClinicOn Sunday, September 8, 2013, approximately800 guests gathered for the “Boot Scootin’Right Next Door” Grand Opening Celebrationof Parkinson Voice Project’s new voice clinic.The event began with a parade from the old

clinic to the new clinic led by LOUD Crowdmember, Jerry Ragsdale, driving his Mercedes500SL convertible, followed by a Drum Linegenerously donated by Vines High School, anda Cowboy on stilts. LOUD Crowd members,their families, friends, as well as communitysupporters enjoyed a Texas-sized BBQ, livemusic, country-western dancers from the DixieChainers Square Dance Club and RISD HighSchools, carnival games, and tours of the beau-tiful, new 6,800 sqft facility.

The new voice clinic has been described by manyas “inspirational, energizing, and BIG.” The wallsare adorned with photographs taken by LOUDCrowd member, Keva Fitzgerald, and there arequotes throughout the clinic that describe thelife-changing results patients treated at ParkinsonVoice Project are experiencing: My Grandkids

Can Hear Me Now; I’m Back In Charge; My Co-Workers Don’t Ask Me To Repeat Anymore; ICan Tell My Family I Love Them. Each office inthe new clinic is dedicated to a person, couple,or foundation who has played an important rolein the development of Parkinson Voice Project.The organization’s values are clearly markedthroughout the lobby and hallways: Hope, Cre-ativity, Integrity, Tenacity, Kindness, Strength,Courage, Empathy, Community, Innovation,Family, Humor, Vision, and Southern Hospitality.These values not only represent Parkinson VoiceProject and the person(s) to whom the rooms arededicated, but these values represent an impor-tant guide to battling Parkinson’s. For example,every person living with Parkinson’s needs hope,courage, and strength; and every person livingwith a chronic disease benefits from showingkindness to others, as well accepting kindnessfrom others.

In the new voice clinic, Parkinson Voice Projectnow has the space it needed to hire additionalstaff, expand the LOUD Crowd groups, treatmore people with Parkinson’s, and hold work-shops for speech-language pathologiststhroughout the country to learn our SPEAKOUT! and LOUD Crowd methods.

Events

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Parkinson Awareness LuncheonOn April 3rd, 2013, three hundred guests arrivedat the beautiful Dallas Country Club for ourParkinson Awareness Luncheon. Event highlightsincluded a heartfelt speech by Lisa TemerlinGottesman, the daughter of honorary chairsKarla and Liener Temerlin. She spoke about therevitalization of her father’s voice, which hadbeen affected by Parkinson’s. In addition, the featured speaker, Rich Clifford, a former NASAastronaut and Parkinson’s advocate, excited thecrowd with fascinating stories about spaceflightand traveling to the space station Mir.

The event also included a “Mystery Box Game”sponsored by Pampillonia Jewelers, which featured thirty pieces of jewelry sold in closedboxes to guests, including a 6.5 carat bluetopaz ring, won by attendee Lynn Wagner. Fourlucky raffle participants also walked away withfabulous prize packages worth over $9,000.

Talk WalkEnergetic participants walked NorthPark Centeron May 4th to show support and to raisemoney for Parkinson Voice Project. Registrantsincluded people with Parkinson’s, their familiesand friends, medical and speech-languagepathology students, professionals who workwith people with Parkinson’s, and communitysupporters. The walkers received free valet,lunch, special discounts at participating stores,and a souvenir photo provided by Mi PhotoBooth. Participants also received door prize en-tries and earned additional entries by walkingmore laps around the mall and by raising moremoney for the organization.

TALK WALK continues to be one of The LOUDCrowd’s favorite events, and we look forwardto seeing our supporters at NorthPark Centerfor the 6th annual TALK WALK scheduled forSaturday, May 10th, 2014!

Never Grow UpOn Saturday, September 28th, approximately 800guests filled the auditorium at Heights BaptistChurch for The LOUD Crowd’s annual singing performance. This year’s celebrity was BroadwayStar Cathy Rigby, best-known for her role as the“boy who never grows up.” Ninety LOUD Crowdmembers rehearsed all summer to perform songsfrom Peter Pan, such as I Gotta Crow, I Won’t GrowUp, and I’m Flying. A special treat during the per-

formance were LOUD Crowd members who portrayed the roles of the grown-up versions of John,Michael, Wendy, Tiger Lily, the Twins, and Nana. Captain Hook, played by Dallas musician MichaelMedley, inspired the audience and The LOUD Crowd with his booming, baritone voice. Plans arealready underway for next year’s show.

Financial Report

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FinancialsIn February 2012, Parkinson Voice Project received a “No Change Determination” as a result of a routine IRS audit. All financials were substantiated and no changes were recommended.

July 1, 2012 - June 30, 2013

Source of Funds70% Individual $1,374,50020% Foundation $394,200

4% Event Income $84,9003% In Kind $61,3002% Corporate $49,1001% Other $12,000

Income Total $1,976,000

Use of Funds78% Patient Care $886,00012% General & $132,000

Administrative10% Fundraising $116,000

Expense Total $1,134,000

Source of Funds

Use of Funds

70% Individual

78% Patient Care

12% General& Administrative

10%Fundraising

20% Foundation

New Location Remodel ReportLeasehold Improvements $567,142Furniture, Artwork, $152,655and AppliancesTelephone, Computers, $26,535and EquipmentOther Expenses $24,112

Total $770,444

1% Other2% Corporate

3% In Kind4% Event

Income

Special Fund

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The Duncan E. Boeckman Endowment Fund

On behalf of ElizabethBoeckman, ParkinsonVoice Project is proudto announce the cre-ation of The Duncan E.Boeckman EndowmentFund, honoring herhusband of fifty-fouryears and Parkinson

Voice Project’s former LOUD Crowd member,Duncan Boeckman.

Mr. Boeckman, known for his keen intellect,kindness, and his infectious humor, was well-known in the community for both his professional and personal pursuits. Starting in1964, he served as a partner at the law firm,Golden, Burrow, Potts, and Boeckman. He specialized in securities litigation and arbitra-tion and was general counsel to two regionalbrokerage firms, and litigation counsel to another. He was named a member of the TexasState Securities board in 1982 where he laterserved as its Chairman. Duncan had lifelong interests in politics, the arts, archeology, hisfamily, and basset hounds.

To celebrate his life and his generous spirit,Mrs. Boeckman has established an EndowmentFund with a commitment of $1 million to honorthe memory of her husband and to help manymore people living with Parkinson’s receivequality voice treatment at Parkinson Voice Project.

The Duncan E. Boeckman Endowment Fundstrengthens Parkinson Voice Project in its mission of preserving the voices of those withParkinson’s and related neurological disorders.The Fund allows donors to have a lasting impact on Parkinson Voice Project’s role in the community and will help people withParkinson’s for years to come.

Bartholomew CircleLeave a Lasting Legacyto Parkinson Voice Project

In 2008, Bart and Joan Bartholomew made agenerous gift which enabled Parkinson VoiceProject to launch a “Pay It Forward” system forproviding its services. No patient would becharged for voice therapy, and no patientwould be turned away due to financial limita-tions.

This holiday season, consider including Parkin-son Voice Project in your estate plans and helppeople with Parkinson’s now and for years tocome.

Bart Bartholomew and Samantha Elandaryinvite you to join them as the foundingmembers of the “Bartholomew Circle.”

All donors who make this commitment by December 31, 2013 will be recognized asfounding members on a legacy plaque locatedin Parkinson Voice Project’s new clinic.

For more information about the Duncan E. Boeckman Endowment Fund or Bartholomew Circle, contact Samantha Elandary at

selandary@ParkinsonVoiceProject.orgor call (469) 375-6500.

646 North Coit Road, Suite 2250Richardson, Texas 75080Phone: +1 (855) 70-SPEAK

(469) 375-6500 | Fax (469) 375-6510www.ParkinsonVoiceProject.org