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Application for ArchCare @ Saint Teresa on Staten Island Part II: Community-based, Family-governed Self-Direction Community

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Application for ArchCare @ Saint Teresa on Staten Island Part II: Community-based, Family-governed Self-Direction Community

Yesterday, we invited the Press and Staten Island Community to take a tour of ArchCare @ Staten Island. It was a great day and here are some highlights and updates.


From the Parents Committee:

“One Perfect Day 24/7/365”

When I started down this housing and community path for Autism/DD community, I always pulled inspiration from our friends at Surfers Healing who create “one perfect day” of surfing for the Autism community. My goal was to create a community that took that surfing spirit into a lifelong community for our Autism and Developmentally Disabled population.

As Parents, we were all very very excited yesterday about the commitment from ArchCare, Saint Teresa Parish, and the entire Staten Island community to reach in, reach out and truly support this community. There were so many new ideas presented to us about how to make ArchCare @ Saint Teresa work. It was an inspiring day, and we hope and expect ArchCare @ Saint Teresa to be a model for other projects.

Jackie Ceonzo, Susan George, Donna Maxon, and Mike Sweeney


From ArchCare @ Saint Teresa:

Offering housing for young adults with Autism 21 years of age and over, transitioning to independent living, ArchCare at St. Teresa will be located at 139 Windsor Road, Staten Island on the campus of Saint Teresa of the Infant Jesus Roman Catholic Church. The housing is projected to be available in late summer, 2019. It will feature separate apartments with a combined living/dining/sleeping area, a bathroom and a small kitchen with a stove, refrigerator and microwave. A recreation area, community room, teaching kitchen, lounge and laundry will be shared by the residents. The building and apartments will have fire, smoke and emergency response alarms. The building will be fully sprinklered and will have a key fob access system. Residents must be able to live independently. No support services will be provided, but it is anticipated residents may receive services through self-directed funding and from Circles of Support.

A live-in project manager will be responsible of assuring the cleaning and upkeep of the building and will respond to emergencies when he is present in the building. It is anticipated that the Circles of Support will help develop and run group activities. Residents may also have individual staff support through self-directed funding.

ArchCare at St. Teresa will not have 24 hour supervision, but residents can arrange extended supervision through self-directed funding, other resources or by their Circles of Support. Families will be able to work together to develop support systems.


CBS New York Report - Thursday January 18, 2019


Question and Answer from ArchCare:

Why is there a need for special housing for young adults with autism?

The number of young adults with autism among our local parish families and across Staten Island continues to grow, and many worry that they will have no place to go or people to live with as their parents and siblings age. Prompted by concern for these young people and their families, Cardinal Timothy Dolan challenged ArchCare, the non-profit healthcare ministry of the Archdiocese of New York, to identify creative ways to help. When told of the opportunity to repurpose an unused convent building at St. Teresa’s to create individual apartments for young adults with autism, he immediately gave his blessing to the project. 

Why are St. Teresa’s and ArchCare doing this?

It is a way for St. Teresa’s and the archdiocese to put an unused Church property to good use in the way Jesus would want us to – to help members of our community who need and deserve our help, compassion and support.

What is ArchCare?

ArchCare is the non-profit healthcare ministry of the Archdiocese of New York. ArchCare cares for more than 9,000 people of all faiths every day across the archdiocese in their homes, in the community and in its skilled nursing and rehabilitation centers. On Staten Island, ArchCare provides skilled nursing care and rehabilitation at ArchCare at Carmel Richmond Nursing Home, comprehensive home health services, and a PACE program that helps hundreds of people, many with intellectual and other disabilities, continue to live safely and independently in the community instead of in institutions. 

Who will be living at St. Teresa’s?

The residents will be young adults with autism who have “aged out” of programs in their early 20s and are capable of living safely and successfully with the level of independence the residence will require. Some will likely have jobs in the community, while others may leave to attend classes or other programs during the day. Their families will continue to be involved in their daily lives and, together with the residents, will be responsible for arranging for any services they might need, such as transportation personal assistance. While the focus is on young people with autism, those with other developmental disabilities who are capable of living safely with the degree of independence the residence will require may also be considered.

Where will the residents be from?

The initial goal is for half of the residents to come from within Saint Teresa’s Parish and 50% from elsewhere. Typically, they will have been living at home with their families and will be living in the community for the first time. As a condition of residency, their families will agree to continue to be active in their lives and commit to serving as members of a family council, who will work together to ensure that residents are successful and address any issues that may arise. That’s why ArchCare is referring to this as community-based, family-governed housing.

How will residents be selected?

Residents will be selected by a panel of autism advocates and other experts with experience working with young adults with autism. Residents will have to meet specific criteria, including: 

  • Residents must capable of living safely with the degree of independence the residence will offer;

  • Residents’ families must agree to continue to be involved in their lives and their care for the foreseeable future and serve as members of a family council who will work together to represent their loved ones’ interests as necessary;

  • The residence must be an environment in which residents can continue to thrive socially, emotionally and intellectually.


Is the building being enlarged or changed in any way?

The building is not being enlarged, and the “footprint” will remain exactly the same. The renovation will mainly be taking place inside to bring the building up to code and create the individual apartments and common living spaces. 


How much will this cost St. Teresa’s Parish?

Absolutely nothing. The estimated $2.5-3.5 million cost of construction will be covered by ArchCare and other funding sources. ArchCare will lease the building from the parish under a long-term lease and assume responsibility for all maintenance and repairs. St. Teresa’s will receive a regular stream of income in the form of fair market rent for the property, and will no longer face the risks and costs of maintaining an unused building or finding other tenants. 


Is ArchCare looking to create similar residences elsewhere?

Not immediately. The hope is that St. Teresa’s will serve as a model that can be replicated not just by other parishes but also by others in the community with space to offer and the desire to help. 

What is the timeline for the project?

ArchCare announced the project in mid-2017 and construction began in early 2018. Current projections call for the renovations to be completed in July 2019 and for residents to be able to begin moving in by September. Applications are currently being accepted, and resident selection will take place in May. 

Do residents have to be Catholic? 

The residence will be open to people of all faiths. Of course, residents who would like to attend Mass will always be welcome at St. Teresa’s.

Will any residents be coming from institutions?

The residence was conceived and is being designed as transitional housing to help individuals with autism who have been cared for at home live away from their loved ones for the first time. The goal is to provide a comfortable, homelike environment in which they can develop the skills and relationships they need, and perhaps be able to live in an even more independent setting in the future. 

Will there be a caretaker or other staff on-site?

There will be a full-time project manager who will be responsible for the maintenance and upkeep of the building and will respond to emergencies when present.

What kind care and other services will ArchCare be providing? 

This is a residence, not a care facility. ArchCare’s role will be that of a landlord. Some residents and families may choose to obtain services from ArchCare programs, but that would be up to them and is not required to live at St. Teresa’s. 


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NYC Showing Monday January 14, 2019 - "Extraordinary People: A Documentary About Adults with Autism & Employment"

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NYC Showing Monday January 14, 2019 - "Extraordinary People: A Documentary About Adults with Autism & Employment"

On Monday January 14, 2019, Luv Michael, NSASA, and Extraordinary Ventures of North Carolina are hosting a screening of "Extraordinary People: A Documentary About Adults with Autism & Employment". Following the film, there will be a panel discussion on the business of Luv Michael and employment for 21+ Autism population.

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Luv Michael is an existing Autism business in NYC, and they train, educate, and employ people with Autism. Luv Michael produces a high quality organic, gluten-free, and nut-free granola without harmful chemicals and toxic allergens. I am a happy client and I typically have 2-3 bags in my backpack on a daily basis!!

Please RSVP to Clare Davis if you can attend: clare@luvmichael.com


Please join us for a private screening of a new documentary and conversation around creating meaningful employment for adults with autism and disabilities.

The 30-minute film follows the stories of six individuals across the spectrum who tap into individual skills and strengths to find success working at a special purpose business called Extraordinary Ventures. “They’ve been told they can’t do it. Well, look at them now!”

While a job is a vital source of pride and self-esteem, opportunities for this population are scarce. It is incumbent on us all—individuals, families, communities, employers—to be more accepting and open to new ideas. The film explores ways to create businesses and meaningful employment around what people are good at, not what they can’t do.

A panel discussion will follow the film.
— Clare Davis of Luv Michael

Monday, January 14, 2019

7:00PM

AMC Loews Orpheum 7

1538 Third Avenue, East 86th Street

New York, NY 10028

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Rising Tide U - 7 Ways Autism Makes a Business Better

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Rising Tide U - 7 Ways Autism Makes a Business Better

Molly Sebastian of Invictus Enterprises seems to know everything and everyone in the Autism employment universe. Molly introduced me to Rising Tide U, which came out of the now famous (in the Autism world) Rising Tide Car Wash in Florida. They have created “7 Ways Autism Makes a Business Better”, and they have an online course. The advantages they list from their experience at the Rising Tide Car Wash are:

  1. Following Processes and Rules;

  2. Safety;

  3. Eye for detail;

  4. Turnover;

  5. Culture of Service;

  6. Media and Word of Mouth; and

  7. Loyal Customers.


Cornell University’s Yang and Tan Institute is also working on these same issues:

The Yang-Tan Institute advances equal opportunity for people with disabilities in partnership with federal and state government and philanthropic organizations.

In addition, in NY State, there are these Tax Credits and Benefits to employers. 


Rising Tide is a scalable conveyorized car wash dedicated to the empowerment of individuals with autism. Each Rising Tide location will have high exposure in the community and provide employment for people with autism through easy to learn, process driven labor. Rising Tide will have strong enough profitability to support a community of people with autism through living wages, career advancement opportunities and independent living skills and self-advocacy training.
— Rising Tide Car Wash

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ArchCare @ Saint Teresa - Former Convent to be Special Needs Community - #Self-Direction

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ArchCare @ Saint Teresa - Former Convent to be Special Needs Community - #Self-Direction

Update December, 2018:

Below are some updated photos from Eric Feldmann from our Work Group - ArchCare @ Saint Teresa. The construction is going well, and sheet rock is now onsite:

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The Garden (future)

The Garden (future)


The project is now gaining some financial attention too with support from:

  • The Staten Island Foundation has given $50,000,

  • An unnamed $25,000 grant from a foundation contact of an ArchCare board member, and

  • The Federal Home Loan Bank of New York awarded the project $243,000, through its Affordable Housing Program. 

Other foundations are now being contacted.


December 2018 Updated Parameters for ArchCare @ Saint Teresa

Offering housing for young adults with autism 21 years of age and over, transitioning to independent living, ArchCare at St. Teresa will be located at 139 Windsor Road, Staten Island on the campus of St. Teresa of the Infant Jesus Roman Catholic Church.

The housing is projected to be available in late summer, 2019. It will feature separate apartments with a combined living/dining/sleeping area, a bathroom and a small kitchen with a stove, refrigerator and microwave. A recreation area, community room, teaching kitchen, lounge and laundry will be shared by the residents. The building and apartments will have fire, smoke and emergency response alarms. The building will be fully sprinklered and will have a key fob access system.

Residents must be able to live independently. No support services will be provided, but it is anticipated residents may receive services through self-directed funding and from Circles of Support.

A live-in project manager will be responsible of assuring the cleaning and upkeep of the building and will respond to emergencies when he is present in the building.

It is anticipated that the Circles of Support will help develop and run group activities. Residents may also have individual staff support through self-directed funding.

ArchCare at St. Teresa will not have 24 hour supervision, but residents can arrange extended supervision through self-directed funding, other resources or by their Circles of Support. Families will be able to work together to develop support systems.
— ArchCare at Saint Teresa

Updated May 3, 2018

  • The name is now "ArchCare at Saint Teresa";

  • Asbestos removal has begun on the building;

  • New move in date is summer of 2019;

  • This would be a “non-certified setting” in the OPWDD system;

  • ArchCare at Saint Teresa will have a booth at the JCC of Staten Island Special Needs Resource Fair on May 11, 2018. Thanks to Senator Andrew Lanza for the support to our community;

  • Applications to ArchCare at Saint Teresa will begin this summer of 2018 at the Autism Housing @ ArchCare website. Offline applications will be accepted too.


Original Story:

Saint Teresa's Convent, Staten Island, NY - Summer 2017 - The "Before"

Saint Teresa's Convent, Staten Island, NY - Summer 2017 - The "Before"

Saint Teresa's Gym - separate building from The Convent

Saint Teresa's Gym - separate building from The Convent

Saint Teresa's Church

Saint Teresa's Church

Monsignor William Belford - Saint Teresa's Parish

Monsignor William Belford - Saint Teresa's Parish

How do you implement "Self-Direction in the OPWDD System"in a residential community, and how do you make it great? ArchCare, The Continuing Care Community of the Archdiocese of New York, is converting a beautiful building at Saint Teresa Parish on Staten Island for our Special Needs population. 

For those that are not familiar, "Self-Direction" is a big shift for the Developmentally Disabled community in New York State and the USA. Many parents and many agencies are concerned about these shifts of empowering individuals over institutions:

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Based on personal experience from our son's after-school programs, we are big fans of "Self-Diection". We also realize that it will not be a fit for everyone, but our friends at ArchCare are giving the Self-Direction population a huge head start on Staten Island.*

ArchCare cares for people of all ages and faiths where they are most comfortable and best able to receive it – at home, and in the community. As the Continuing Care Community of the Archdiocese of New York, we see enhancing the lives of our elders and others who need extra help to stay healthy and live life to its fullest as more than just a job. To us, it’s a privilege and our calling.

It is still early in the process, and I am on the a Parent's Committee working with ArchCare and Saint Teresa Parish. This community has real potential to serve as a model for our Self-Direction community. Watch the NY 1 report from this summer:

The initial game plan is for:

  • 10 studio apartments, each with their own kitchen and bathroom.

  • There will be 2 apartments for staff and 8 for residents.

  • There is an existing beautiful kitchen and dining area where residents can invite parishioners, neighbors, and friends into OUR community and we will serve them meals and entertainment!!

  • The building has common areas for community events and employment programs.

  • Outside independent programs and employment for residents are supported.

  • Our goal is to have collaboration with GrowNYC and similar groups to have "farms" on Staten Island. :) Yes farms on Staten Island!! Ok, it is more like a small garden, but we want our population to live the "farm to table" lifestyle.

  • Saint Teresa's also has a school, gym, huge common area, and the church that our population can integrate with.

  • ArchCare is contributing $2.5 million in capital improvements to the former Saint Teresa's Convent building, and they are taking below market rents on a 40 year lease to match OPWDD rates.

  • Target move-in date - Summer 2019.

This will be complicated, fun, and it will fill OUR lives with purpose. I am very excited by the commitment from ArchCare and the Parent's Committee, and thanks to Jackie Ceonzo of SNACK NYC for inviting me to this group. I believe that ArchCare @ Saint Teresa will be a catalyst for additional facilities in NYC and Upstate in the ArchCare system. More to follow in the coming months, and I am genuinely grateful to ArchCare's CEO Scott LaRueCardinal Dolan, and Monsignor William Belford of Saint Teresa's Parish

* Dustin Sweeney will not be a resident of ArchCare at Saint Teresa, but I am very motivated to make this work for benefit of the population as it will be an excellent model to build on for future projects.

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The Brielle on Staten Island - Seniors + Adult Children with Disabilities

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The Brielle on Staten Island - Seniors + Adult Children with Disabilities

A number of people reached out to me last week about “The Brielle at Seaview”, an assisted living facility that wants to pilot a co-living program for seniors who are living with and taking care of their adult children with disabilities. “The Brielle has companion suites – two separate bedrooms that have a common dining and kitchen area, as well as a bathroom -- could house spouses, siblings, or parents and children.”

Here is the full story at Staten Island Live and Disability Scoop.


Diane Campione, special needs program coordinator for the New York Public Library, and Diana Thompson, lifestyle and engagement director at The Brielle, hope to get a pilot program off the ground that would ease the burden for seniors who are caring for a loved one with a disability. Campione is the parent of a 22-year-old son with high-functioning autism.

The Brielle, an assisted living facility which has a capacity of 188 that currently operates at 96, is looking to start co-habitating seniors who are caring for an adult child with disabilities in the facility.

“This would be a unique option to keep families together and it has not been available before,” Campione said.
— Disability Scoop
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Needless to say, there will be complications with anything new, but I personally think this is a great idea. From a friend on Staten Island, “Yes I have spoken to Diane, who is mentioned in the article. This could be an option for a parent who requires assisted living care and her developmentally disabled adult child to live with supports. The senior living costs would be over $7000.00 per month (and could be higher depending on variables); and for the adult disabled child they may give a half price deal. I don't think that OPWDD funding could be used at all the way things are designed currently.”

Let’s see where this goes, but it is a great idea.

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Is the Otto Specht/Threefold Community the 'Integrated' Model We Have Been Looking For?

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Is the Otto Specht/Threefold Community the 'Integrated' Model We Have Been Looking For?

November 2018 Update:

We are now taking inquiries for the two residential homes that are owned by Otto Specht parents. There is one female home, and one male home. For more information, please email me.


Over the past few years, the Developmentally Disabled community has heard chatter from Albany and Washington stressing 'Community Inclusion' and 'Integration'. The intent is to enable the Developmentally Disabled to live in an integrated environment rather than an isolated or 'intentional' community. There are two key benefits to an 'integrated model':

  1. It is better for a majority of the Developmentally Disabled population (recognizing, though, not all will be able to integrate);

  2. It is a less expensive model for New York State taxpayers.

But what is integration, and how do we implement it without it being forced on but rather welcomed by society in a symbiotic, mutually beneficial relationship? The reality is, nobody really knows. NYS OPWDD presents a broad and very generic outline on their Most Integrated Setting Coordinating Counsel (MISCC) page

With thanks to our friend and Self-Direction Broker Ken Siri, we recently visited the Otto Specht School and the larger Threefold Community in Chestnut Ridge, NY (Rockland County), situated on a 200-acre campus just a few miles west of the Palisades Mall. 


The mission of the Otto Specht School is to make possible a self-sufficient and positive future for children with developmental delays, learning challenges and sensory imbalances who do not thrive in a typical classroom setting. To this end we provide innovative educational programming, based on the methods of Waldorf education, in a safe environment where therapeutic, social, and academic needs are addressed.
— Otto Specht website
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Jeanette Rodriguez - Program Director of Otto Specht School

Jeanette Rodriguez - Program Director of Otto Specht School

Programs at Otto Specht include:

  1. Early Childhood

  2. Grades 1-12

  3. Vocational Arts Program (grades 9-12)

  4. Transitional Life Skills Program - offered for students who have completed High School and require a post-secondary program to build the practical, vocational, and social skills needed to successfully navigate their path towards independent living.

The Transitional Life Skills Program is growing, a reflection of obvious demand. Two Otto Specht families have purchased homes on the periphery of the campus for their adult children to potentially share with other adult residents. Other housing models are also being discussed. 


The task of Threefold Educational Foundation is to support and maintain a living community of practical work inspired by the teachings of Rudolf Steiner. The Foundation provides the spiritual basis for work arising from anthroposophy in the Threefold community.
— Threefold Foundation website

There are a many programs at the Threefold Educational Foundation, listed here

felloeship community.jpg

One potential key to solving the 'integration question' for our Developmentally Disabled community is The Fellowship Community, a 501c3 separate from Otto Specht and Threefold. The Fellowship Community consists of "150 elderly persons, children and coworkers [that] live in a rural setting of farm, woods and orchards. Working and learning together in service to others and in caring for the earth is the central motif of the community life. The Fellowship Community operates the Duryea farm, a mixed vegetable production which also includes an apple orchard, dairy herd and on-farm dairy."

Eureka!! We have finally found a truly integrated community where elderly, neuro-typical, and developmentally disabled embrace the opportunity to live and thrive together in an established working community less that 40 miles from New York City. Now, how do we expand and replicate this model and its mission?


Fundraising for New Building at Otto Specht School & Community

Otto Specht's existing classrooms are temporary, rented spaces within the Threefold and Fellowship Communities. They have started a $16.7 million fundraising plan for a new building on the campus:

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From the Otto Specht website, "The building's two wings embrace the landscape and invite the beauty of the surrounding region into the building, while simultaneously bringing the inside "out" through frequent opportunities for engagement with the outdoors. A central lobby connects the two wings on the first and second levels, welcoming students, parents, and visitors to a light-filled community space at the heart of the building. The building will be located at the junction of a natural landscape, a biodynamic farm, and our therapeutic herb garden. The buildings' forms are attenuated, stretching voluminously over the landscape, as though they were pulled and twisted into being - infusing the environment with kinetic energy."

For additional information on the school building project, please see the Otto Specht fundraising page

For additional information on Threefold, see their website and their annual report below: 

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Katie and Dustin Sweeney: CO/LAB Theater Group and the NYC Marathon

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Katie and Dustin Sweeney: CO/LAB Theater Group and the NYC Marathon

I normally shy away from talking about Dustin directly on here, but he is why I am here and this was a great film by Katie and Dusty for the benefit of our friends at CO/LAB. Many of you have not heard Dustin speak before, so consider this his world premier (he is a good reader).


Dear Friends and Family:

On November 4, I will be running the NYC Marathon for the 4th time. This journey will be different, as I am committing my run this year to benefit CO/LAB, the amazing theater group that Dusty ACTS — yes acts — with and I am proud to serve as a Board Member of. I have never run a marathon in support of a non-profit before — a lot more pressure — but CO/LAB has become too important to us not to take the opportunity and ask for your support as I undertake this oh so daunting journey.

CO/LAB (Creative Opportunities without Limits And Boundaries) provides individuals with developmental disabilities a creative and social outlet through theatre arts. Dusty has participated in their Musical Theatre Ensemble class, performed in his first show, With Words, and is learning about Physical Theater in CO/LAB’s newest class. For many years, Dusty has enjoyed Broadway as a member of the audience…thanks to CO/LAB he now gets to experience the joy of expression and creation and perform on the stage!. Please enjoy this short (2:20) film of Dusty’s CO/LAB journey:

At this year's autism friendly performance of The Lion King, something truly amazing happened during Simba’s second act solo, Endless Night. Dusty was singing along, and suddenly got an anguished look on his face and clenched his fists. I braced myself for a melt down. The song built and Dusty’s look became even more anguished and his knuckles turned white, they were squeezed so hard. And then….wait for it….the song ended, Dusty relaxed his hands, and he smiled. In that moment, Dusty had become Simba. Dusty was Acting. That’s the power of theater. That’s the power of CO/LAB.

CO/LAB has created a truly inclusive and judgement-free environment that encourages Dusty to discover and express his voice through acting.  Please consider supporting my marathon journey this year through my #Imwithcolab Crowdrise campaign:*

https://www.crowdrise.com/o/en/campaign/imwithcolab/katiesweeney  

CO/LAB’s core programming is offered at no cost to its Actors; thus any donation of any size is greatly needed and genuinely appreciated.  A lot of people giving a little adds up to a lot. 

There once was a day as many of you know when Dusty got thrown out of a theater — a Broadway theater in fact. Now, thanks to CO/LAB, he is theater! Moments of despair. Moments of glory. Much like the Drama masks. Much like a marathon.  Much like life.

Our love and gratitude,

Katie, Mike, Dylan and Dusty

*If you prefer, you can mail your gift to me, made out to CO/LAB Theater Group (see address below) and I will be honored to hand deliver it to Becky Leifman, our wonderful co-founder and Executive Director.

The Sweeney Family

1619 3rd Avenue, Apt. 21K

New York, NY 10128


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