American Parkinson Disease Association Middle TN Chapter

Transcription

1 American Parkinson Disease Association Middle TN Chapter General Information Contact Information Nonprofit Address American Parkinson Disease Association Middle TN Chapter 2300 Patterson Street Nashville, TN Phone (615) Web Site Web Site At A Glance Year of Incorporation

2 Mission & Impact Statements Mission The mission of the APDA Middle Tennessee Chapter is to provide the highest quality programs and services to people affected by Parkinson's disease. We do this through compassionate support, meaningful education, and life-enhancing services. Background Parkinson's disease develops when brain functions controlling balance, movement, walking and speech are hindered by the death of specific brain cells resulting in the decreased production of a chemical substance - dopamine - that plays a very important role in the transmission of impulses in the brain. Symptoms of the disease progress from tiredness and weakness in early stages to near-total loss of movement and control in later stages. The symptoms can be treated in most cases with drugs, but the cause and cure of this disease has yet to be found. There is hope...the American Parkinson Disease Association, Inc., works tirelessly for Parkinson's patients and their families through medical research, patient and family support and education. The American Parkinson Disease Association (APDA) was founded in 1961 to "ease the burden and find a cure" for Parkinson's disease. The APDA is, by far, the largest grassroots organization in the United States dedicated to fighting Parkinson's disease. Headquartered in New York, the organization focuses its energies on research, patient support, education and raising public awareness of the disease. The APDA has financially supported research leading to every major breakthrough in the knowledge and treatment of Parkinson's disease. Each year the APDA scientific advisory board reviews grant requests and submits recommendations for funding researchers whose work shows promise of making scientific breakthroughs or finding improved treatments for Parkinson's disease. The APDA national office also coordinates the efforts of chapters, information & referral centers, affiliated support groups and eight centers for advanced research across the nation. The Middle Tennessee Chapter was established in 1993 in conjunction with the establishment of an Information & Referral Center at TriStar Centennial Medical Center. Impact 1.) Provided twice weekly exercise program (PEP) through partnership with Fifty Forward Knowles. 2.) Provided weekly Dancing with Parkinson's program. 3.) Published new website. 4.) Goal to increase the number of board members leading the Chapter 5.) Goal to increase socialization/recreational opportunities available to those with limited mobility. 6.) Goal to increase public awareness of PD through specific organizational events. Needs 1) Board members 2) Raising awareness of PD and the association's outreach and services 3) Increased revenue to expand support services. $1500 can fund 36 Dancing with PD classes 4) Increasing the number of volunteers 5) Improving communication avenues to those served by APDA Other ways to donate, support, or volunteer Donations may be made by mailing a check to the addresses listed above. Anyone interested in volunteering should contact Caryn Crenshaw, Service Categories Primary Organization Category Diseases Disorders & Medical Disciplines / Nerve Muscle & Bone Diseases Areas of Service Areas Served TN - Cheatham 2

3 TN - Davidson TN - Dickson TN - Hickman TN - Montgomery TN - Robertson TN - Rutherford TN - Sumner TN - Warren TN - Williamson TN - Wilson While we send materials statewide, our emphasis is service in the Middle Tennessee area. Board Chair Statement I would like to take this opportunity to introduce myself as the President for the Middle Tennessee Chapter of the American Parkinson Disease Association. I became involved with the fight to ease the burden and find a cure in 1994 when my beloved Grandfather was diagnosed with Parkinson's Disease. After moving from Michigan to attend Middle Tennessee State University, I became involved with the chapter in 2001 as I watched the progression of the disease affect my Grandfather and the family members who provided for his care. Years after connecting with the MT chapter as a volunteer, I was honored to be asked to join the board of directors in I have served on the board since, and it is my privilege to now serve as President. I look forward to continuing my service to the chapter and all those we touch across Middle Tennessee. We are a close-knit community and I hope you will feel free to contact me if I can be of any assistance to you or your families. This year, we will continue to look for opportunities to further serve this region in easing the burden of PD while maintaining our successful programs and support groups. We invite you to visit our newly renovated website at for details on upcoming events, important program information and the latest news. When visiting the site, we ask that you provide us with an address as we work diligently to take advantage of convenient ways to communicate information regarding chapter activities. I also ask that you consider the resources it takes to continue to provide vital wellness and informational programs, support research and offer support groups for those with PD and their caregivers. Even a modest donation will help maintain these programs and contribute to the research that allows us to fulfill our mission to ease the burden and find a cure for those with Parkinson's Disease. No gift is too small and we are grateful for your generosity. By the way, our chapter just celebrated its 20th year of serving our PD community. This would not have been possible without the hard work of many volunteers over the years as well as the financial support from our donors. We hope to continue our strong tradition of providing support and assistance to those who need our service until a cure is found. On behalf of the board of directors, I extend our best wishes for your health and happiness. Thank you for your involvement and support of the Middle Tennessee Chapter of the APDA. Sincerely, Wendy L. Nadeau, M.S. President Middle TN Chapter American Parkinson Disease Association 3

4 CEO Statement Did you know that more people suffer from Parkinson s disease than multiple sclerosis, muscular dystrophy and Lou Gehrig s disease combined? That the disease affects not only the elderly but even people in their 30 s and 40 s and this figure is growing at an alarming rate? Parkinson s disease is a devastating neurological disorder. It shatters the dignity of its victims and cripples their bodies until it slowly, cruelly, destroys their lives. Parkinson s disease affects approximately 1.5 million Americans. However, not all of these cases have been diagnosed. One of the primary goals of the American Parkinson Disease Association - Middle Tennessee Chapter is to generate awareness of the disease and its symptoms so that more people and their families can be helped. The APDA conducts this outreach effort through an Information & Referral Center housed at TriStar Centennial Medical Center. The funds raised by the Middle Tennessee Chapter are used to help continue the mission of the APDA right here in Middle Tennessee. We strive through grants, fundraising events and other initiatives to raise money for programs that directly impact Parkinson s sufferers and their caregivers. These programs include: * Support groups (10 currently are offered throughout TN) * Exercise classes * Quarterly newsletters * Symposia on topics of interest * In fiscal , we served over 1,000 Parkinson s patients and caregivers. The APDA - Middle Tennessee Chapter supports national research efforts as well. Most of our board members have been touched by Parkinson s disease in their own lives which makes for a level of commitment not often encountered at the board level. 4

5 Programs Programs Support Groups 10 groups statewide offering education, support, and peer to peer sharing for patients, caregivers and family. Budget 2500, Adults, Support group leaders will report consistent attendance and positive feedback from members. The association will continue to maintain current network of support groups and add groups in geographical area which are not currently served. Program coordinator makes contact with leaders to plan agendas and speakers for meetings, to provide educational materials and maintain active attendance rosters. Leaders self report regarding attendance and speaker receptance. Examples of Program Success Two new support groups were added in the state during Parkinson's Exercise Program Traditional exercise class held twice weekly to increase strength & range of motion to prevent progression of disease. Budget 5200, Adults, At least 10 individuals with PD will participate in each class. Physicans will suggest to their PD patients to enroll in this program. Success is monitered by attendance and satisfaction surveys. Examples of Program Success One couple (patient and caregiver) who attend have been doing so for 10 years. Counseling Budget Category A registered nurse is available to help families explore interventions for maintaining optimal health and wellness. this service is currently supported by the APDA national budget Diseases, Disorders & Medical Disciplines Parkinson Disease Aging/Elderly/Senior Citizens, Adults, Utilization of this service will increase by 5% each year. People dealing with PD will utilize this service. Utilization. Examples of Program Success Over 50 sessions were held in

6 Information & Referral Budget Category Referral to physicians, support organizations and community resources; maintenance of extensive multi-media resource library on Parkinson s disease. currently funded by the APDA national budget Diseases, Disorders & Medical Disciplines Parkinson Disease General Public/Unspecified, Aging/Elderly/Senior Citizens, General Public/Unspecified Contacts will increase by 5% each year. Anyone requiring information about PD will contact our association. Number of conacts made. Examples of Program Success Patients, caregivers and students typically utilize this service. Over 500 educational materials and referrals were made available in Lunch and Learn Series of educational programs presented by local Movement Disorder Specialists. Budget 12,500 Examples of Program Success, Adults, Those attending will gain greater knowledge. Falls will decrease resulting in fewer injuries; caregivers will report a better understanding of their role in the management of PD; young onset individuals will establish a network to solidify their support systems. These conferences will continue to serve the needs of those attending and will have greater attendance each year. Post evalutions are used to determine success. The caregiver conference held in 2008 had a 100% positive feedback survey. 6

7 Caregiver Respite Budget Category Examples of Program Success The association partners with the Tennessee Respite Coalition to provide financial assistance to familiy caregivers. 24,000 if not funded by current grant from Baptist Healing Trust Diseases, Disorders & Medical Disciplines Parkinson Disease Aging/Elderly/Senior Citizens, Adults, Program will serve 20 caregivers. The program will continue to serve caregivers who are without means to allow themselves a time out from caregiving. Utilization. One caregiver recently stated that she would have to quit working without the support of this program and that her income allows them to purchase the medications that her husband requires. PD 101 Budget Category Examples of Program Success This service allows those newly diagnosed with PD to meet with a registered nurse to gain a better understanding of their disease and local resources that are available to help. currently covered by the APDA national budget Diseases, Disorders & Medical Disciplines Parkinson Disease Aging/Elderly/Senior Citizens, Adults, At least 20 newly diagnosed Parkinson's patients will contact the association each year. Physicans will recommend to those newly diagnosed that they contact our association. Contacts. Recently diagnosed woman of 60 contacted office in November to seek educational materials and schedule counseling session. CEO Comments The American Parkinson Disease Association is unique in that it provides funding for an outreach center in most larger cities in the US. In TN, we are fortunate to have a center in Nashville that are staffed and funded by the national office. The center's registered nurse works in partnership with the local chapter to provide programs and services. This allows the chapter to fund programs and services for base service without having to pay for additional salay or administration. Our need is to have physicians recommend that those dealing with PD contact the organization. Our core services and programs are disease based and geared toward the needs of those with PD and their families. These services are of high quality and meet the needs of the Parkinson community. 7

8 Governance Board Chair Board Chair Wendy Nadeau Company Affiliation Merrary Medical School Term Sept 2011 to Aug Board Members Name Affiliation Status Alex Cohn Price Waterhouse Voting Mr. Steven Cronin Community Volunteer Voting Beth Horrell Community Volunteer Voting Ms. Wendy Nadeau Cumberland University Voting Matt Ramsey PhD Vanderbilt University Voting Dr. Ronald Wilson Brentwood Neurology, PLC Voting Board Demographics - Ethnicity African American/Black 0 Asian American/Pacific Islander 0 Caucasian 6 Hispanic/Latino 0 Native American/American Indian 0 Other 0 Board Demographics - Gender Male 4 Female 2 Unspecified 0 Governance Board Term Lengths 3 Board Term Limits 3 Board Meeting Attendance % 90% Written Board Selection Criteria? Written Conflict of Interest Policy? Yes Yes Percentage Making Monetary Contributions 100% Percentage Making In-Kind Contributions 50% 8

9 Constituency Includes Client Representation Yes Number of Full Board Meetings Annually 4 Standing Committees Board Development Development / Fund Raising Executive Management Program Risk Management Provisions Commercial General Liability Directors & Officers Policy Special Event Liability 9

10 Management Executive Director/CEO Executive Director Term Start June Ms. Caryn Crenshaw RN Experience Have served as the Nurse Coordinator and Program Director for the MT/APDA Chapter since Staff Full Time Staff 0 Part Time Staff 1 Volunteers 10 Contractors 0 Retention Rate 100% Plans & Policies Does the organization have a documented Fundraising Plan? No Does the organization have an approved Strategic Plan? Under Development Number of years Strategic Plan Considers 5 When was Strategic Plan adopted? Aug 2008 In case of a change in leadership, is a Management Succession plan in place? No Does the organization have a Policies and Procedures Plan? Yes Does the organization have a Nondiscrimination Policy? Yes Does the organization have a Whistle Blower Policy? Yes Does the organization have a Document Destruction Policy? No Affiliations Affiliation Affiliate/Chapter of National Organization (i.e. Girl Scouts of the USA, American Red Cross, etc.) - Affiliate/chapter Year

11 Financials Fiscal Year Fiscal Year Start Sept Fiscal Year End Aug Projected Revenue $21, Projected Expenses $19, Endowment Value $0.00 Endowment Spending Policy N/A Endowment Spending Percentage (if selected) 0% Detailed Financials Revenue and Expenses Total Revenue $10,307,936 $9,359,710 $8,210,799 Total Expenses $8,559,869 $8,238,148 $8,438,527 Revenue Sources Foundation and Corporation $0 $0 $0 Contributions Government Contributions $0 $0 $0 Federal $0 $0 $0 State $0 $0 $0 Local $0 $0 $0 Unspecified $0 $0 $0 Individual Contributions $8,407,720 $7,405,627 $6,471,601 Indirect Public Support $134,428 $102,518 $149,645 Earned Revenue $28,312 $27,757 $29,213 Investment Income, Net of Losses $87,297 $155,131 $137,909 Membership Dues $20,320 $28,859 $34,034 Special Events $1,624,380 $1,497,927 ($630,733) Revenue In-Kind $0 $0 $0 Other $5,479 $141,891 $20,464 11

12 Expense Allocation Program Expense $6,121,673 $5,983,907 $6,365,554 Administration Expense $787,047 $692,427 $864,546 Fundraising Expense $1,651,149 $1,561,814 $1,208,427 Payments to Affiliates $0 $0 $0 Total Revenue/Total Expenses Program Expense/Total Expenses 72% 73% 75% Fundraising Expense/Contributed Revenue 16% 17% 20% Assets and Liabilities Total Assets $11,739,483 $10,865,421 $9,749,521 Current Assets $7,721,754 $6,678,745 $5,727,761 Long-Term Liabilities $0 $0 $84,249 Current Liabilities $2,212,921 $2,882,755 $2,913,063 Total Net Assets $9,526,562 $7,982,666 $6,752,209 Short Term Solvency Current Ratio: Current Assets/Current Liabilities Long Term Solvency Long-Term Liabilities/Total Assets 0% 0% 1% Top Funding Sources Top Funding Source & Dollar Amount Contributions, Gifts & Grants $8,407,720 Contributions, Gifts & Grants $7,405,627 Contributions, Gifts & Grants $6,471,601 Second Highest Funding Source & Dollar Amount Third Highest Funding Source & Dollar Amount Fundraising Events $1,624,380 Federated Campaigns $134,428 Fundraising Events $1,497,927 Investment Income $155,131 Indirect Public Support & Federated Campaigns $149,645 Investments & Sales of Securities $137,909 Capital Campaign Is the organization currently conducting a Capital Campaign for an endowment or the purchase of a major asset? No Capital Campaign Goal $0.00 Capital Campaign Raised-to-Date Amount $0.00 as of 0 Capital Campaign Anticipated in Next 5 Years? No State Charitable Solicitations Permit TN Charitable Solicitations Registration Yes - Expires Feb 2017 Registration No 0 Organization Comments APDA chapters raise money each fiscal year -- through grants, donations, fundraising events -- to fund administrative and program services at the local level. Beginning fiscal year 2016, APDA chapterswill transfer 12

13 20% of gross unrestricted revenue to the national office used to fund administration and research initiatives at the national level. GivingMatters.com Financial Comments Financial figures are taken from the NATIONAL 990, as no local figures were available for multiple consecutive years. Foundation and corporate contributions are included in Individual Contributions sum, as amounts are not separated in completed by Potter & LaMarca LLP. NOTE: Middle Tennessee-specific numbers have been provided for 2012, 2013, and 2014, and are available for view in the downloadable 990 section above. Comment provided by Elizabeth Madsen 6/1/16 Created Copyright 2017 The Community Foundation of Middle Tennessee 13