Our Mission & History
The PA Tourette Syndrome Alliance is a non-profit organization that promotes awareness and acceptance, provides education, and assists families, schools and communities while advocating for individuals with TS.
The services provided by PATSA are focused on increasing understanding of the disorder and providing proven accommodations and strategies so a child or adult diagnosed with TS can succeed!
Tourette Syndrome can be a very complex disorder and many people do not have a full understanding of these complexities.
PATSA’s programs of information, education and disability advocacy strive to promote understanding of Tourette Syndrome in order to promote acceptance of those diagnosed!
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1985
First budget for the chartered chapter for $3,000 and there were 200 clients.
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1986
Appropriation grant received for $50,000
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1987
Funded for $50,000 with part time secretary and rented office.
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1988
Secretary to full time with 750 clients.
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1989
Appropriation increased to $100,000
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1991
Received a Dept of Community Affairs Grant for $100,000 to purchase Office & also received an appropriation from PA Dept of Health for $97,000. We now have 1500 clients.
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1993
PATSA inserted as a line item in the Pa Dept of Health annual Budget for $100,000.
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1994
Pursuit of permanent funding as a non preferred status agency to insure continued funding of $100,000. Full time bookkeeper added.
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1996
Gov Ridge did not include PATSA funding and a reverse mortgage was secured to continue all services until equity was exhausted. We now have 2000 clients.
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1997
PATSA was added to the line item funding in the Dept of Health budget at $100,000.
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1999
One half time position for second advocate, and part time secretary added, bringing staff to three and one half people. The 4 computers were networked, and all were put on the World Wide Web. Client base now at 3050. We purchased the first agency vehicle to be used by the staff to serve the clients in the state of PA.
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2000
Received Grant for ½ of Advocate salary making the position full time and giving us two full time advocates enabling us to be in two places at once. A part time position for secretary is now open which will give us two, for full time coverage. Now have 3102 in clients. We mailed out 3011 information packets in the fiscal year 7/1/99 to 6/30/00 and received 4498 incoming phone calls. We also mailed 10283 newsletters, 2003 individual pieces of information as well as 3916 support group announcements. The two advocates (1 full time & 1 part time) drove 14896 miles in support of our patients.
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2001-2002
We did get the funding from the state but the first payment was received on 12-20-01 six months into the fiscal year. Our demand for requested services has continued and as of May 9, 2002 we now have 3202 patients and the advocates have driven over 24,000 miles and completed 153 IEP & In-services.
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2002-2003
We put up an extensive website, went to outsourcing a full color quarterly newspaper and did a General Assembly breakfast, spoke to a Tampa Florida Chapter and presented at the American Psychiatric Association Convention in Philadelphia. There are now 3302 clients, we drove over 25,000 miles, 156 in-services and Individual meetings, mailed out 551 packets of information and 2223 pieces of information with 9644 newsletters
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2003-2004
In 2003, Mary Lou Reaver, the Founder of the Pennsylvania Tourette Syndrome Association, retired, but the work she began over 20 years ago continues. PATSA maintains educational information on Tourette Syndrome, and provides advocacy programs and endeavors to update all of its services to the state of PA.
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2006-2007
Held first Parents and Kids conference, despite a snow storm it was a huge success.
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2007-2008
The Administrator and Lead Advocate positions changed internally to Administrator and Assistant Administrator. Funding was cut to 58,000. We were able to secure a $40,000 grant to offset the state budget cut. Purchase of a second vehicle.
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2008-2009
PATSA began offering Consultant Services to schools, we hired a grant writer. We were put back in the state’s budget for $96,000
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2009-2010
The state grant was cut to $45,000 for this year. November 1, 2009 the Pennsylvania Tourette Syndrome Association changed our name to the Pennsylvania Tourette Syndrome Alliance, with this change came many others: We disassociated with the National TSA, revamped our website giving members access to additional information and online trainings, changed titles from Advocate to Consultant, new and improved PowerPoint for our presentations including Peer Training. The PATSA Newsletter is currently being published internally and is emailed out and posted on our website for members to view. Due to the budget cut we will not be sending them via mail this year.
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2010-2011
Due to a lack of Funds PATSA has had to layoff our consultant leaving our staff at a total of 3 full time employees and 1 part-time employee. Additionally all staff members have decreased the number of hours worked by 8 hours every two weeks. The need and demand for PATSA is still great but the decrease financial support is putting PATSA in a very vulnerable position.
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2011-2012
PATSA depleted it's modest reserve by June of 2011 and combined with delays of State grant money required the Board of Directors to make major shifts in resources. PATSA staff was reduced to 2 as we lost our support staff, the 2 remaining staff members were moved to home offices to reduce overhead and the office was rented to a tenant. The Board also directed staff to modify our business plan to enlist and train a corp of volunteers to assist with In-service trainings, awareness and disability advocacy in local communities. PATSA was funded by a grant through the PA Department of Health for $71,000. Our 1st printed newsletter in 2 years was sent to over 4,000 homes in PA. An awareness poster was designed by a volunteer and sent to over 2,000 Pediatricians, 200 Neurologists and 700 Libraries across PA.
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2012-2013
PATSA was funded by a grant through the PA Department of Health for $75,000. PATSA advocated for increased funding with the help of Representative Tom Murt. Numerous Representatives and Senators are able to increase funding for Tourette Syndrome to $150,000 for fiscal year 2013-2014 during the last 3 days of the budget negotiations!
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2013-2014
PATSA's increased funding allows us to hire an Outreach & Volunteer Coordinator, contract with an answering service, increase the number of schools served with trainings, move our files to the cloud and fund an overnight TS Family Retreat! Increased outreach and awareness through a video and Public Service Announcement.
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2014-2015
PATSA's increase in funding continues. PATSA has 3 staff members but our volunteers increase to over 60! Our PR Committee plans our 30th Anniversary Banquet held at Camp Eder to kick off TS Family Camp.
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2015-2016
PA State Budget impasse delays funding for TS (among other line-items) for over a year. This causes PATSA to spend down our modest reserve until there is only $10,000 left in the bank! This causes decrease in travel for advocacy and moves staff to part-time hours for the spring of 2016. Our Founder, Mary Lou Reaver dies on June 28, 2016.
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2016-2017
PA State Budget signed on time. PATSA is funded for the full $150,000. We have increased our fundraising efforts over the past 10 years and now have several special events--Pumpkin Run 5K in the fall and participate in Highmark Walk for a Healthy Community in Harrisburg and Pittsburgh. TS Family Camp and TS Family Retreat continue!
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2019-2020
PA State Budget signed on time. PATSA is funded for the full $150,000. Our logo is updated and our address is changed. We now have an official address in Hanover and also one in Bridgeville, PA Allegheny County.
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2020-2021
Global pandemic causes changes for everyone. Schools closing reduced our service requests. New website, new logo, new brochures and doing business via Zoom saved the year!
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2021-2022
Request for services back to pre-pandemic levels. Tourette syndrome is NOT cut from the Governor's draft budget! Major Donor Campaign "Tourette Inner Circle" launched to help us expand services and staff.
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2022-2023
PATSA receives a 6% increase in State Grant Funding making our full grant $159,000. Our Board invests in moving both Consultants to full-time hours, which allows the Administrator more time to apply for grants and focus on increasing donations and funding streams. Administrator's title is changed to Executive Director to better explain the duties of the position. Outreach & Volunteer Administrator title is changed to Director of Operations for the same reason. Inaugural "Can't Sit Still Run/Walk" held in Carnegie on April 30th.