Privacy Policy

Last Updated April 19, 2023

Easter Seals, Inc. (d/b/a "Easterseals") ("we," "our," or "us") understands that data privacy and the protection of personal information is important to you. This Privacy Notice explains how we collect, use and share your personal information, and your rights and choices regarding the personal information we collect about you.

Please read this Notice carefully to understand our policies and practices regarding your personal information and how we will process it. You can also click on the links below to navigate to a specific section.

Scope of Notice
Personal Information Collection
How We Use Personal Information
How We Disclose Personal Information
Easterseals Affiliate Members
Links to Other Sites
Security of Personal Information
Transmission of Health-Related Information
Retention of Personal Information
Your Rights and Choices Regarding your Personal Information
Cookies
International Transfers of Personal Information
Information from Children
Changes to this Notice
Contact Us

1. Scope of Notice

This Privacy Notice applies to all donors, members, website visitors, business partners, employees, job applicants, and individuals who otherwise interact with Easterseals whom we collect personal information from. We often refer to your interactions with us as using our "services" throughout this Notice.

2. Personal Information Collection

We collect a variety of information as part of our operations, including personal information and other information. "Personal information" is any information that identifies, relates to, describes, is reasonably capable of being associated with, or could reasonably be linked, directly or indirectly, with an identifiable individual.

a. How We Collect Personal Information

Easterseals collects information, including personal information, from and about its donors, event attendees and program participants, individuals who interact with our affiliate members, employees and job applicants, individuals who visit our website and other individuals who choose to interact with us. We collect information from or about you in the following ways:

Directly from you. We collect information directly from you when you make a donation, create a user profile on our website, attend an event or program we are offering, apply for employment or gain employment with us, when you visit our website, and when you otherwise voluntarily submit or provide information to us.
Automatically. When you visit and interact with our website, we collect information automatically through cookies. For more information about cookies on our website, please visit the section below titled "Cookies."
From our Affiliate Members. We rely on our affiliate members to provide us with information about the individuals they provide services to and interact with so that we can understand the impact of our and our affiliate members' programs and services, yield actionable insights, and drive future-forward decision making to ensure that our services and programs make the most impact in the communities we serve.
From Other Sources. We may collect information about you from other sources and we may combine information from other sources with information we collect through our services or interactions with you. Examples of the other sources we most frequently collect information from includes national donor data bases and registries, and companies that compile mailing lists about individuals.

b. Types of Personal Information We Collect

The types of personal information we collect depends on how you interact with us, including whether the interaction is through one of our affiliate members or directly with us. In many cases, the personal information we collect will be apparent from the context in which you provide the information.

We collect the following types of personal information from you depending on how you interact with us (i.e., donor, employee, etc.).

Categories of Personal Information	Categories of individuals
Contact Information. This includes your name, mailing address, email address, social media handle, or other similar identifiers.	Donors Employees and job applicants Website visitors Event attendees Program participants Individuals who interact with our affiliate members Easterseals affiliate member users
Identification Information. This includes your SSN, driver's license number, passport number, or similar legal identification information.	Employees and job applicants
Profile Information. This includes information about your activity and interactions with us, including your donor tendencies and donation history, information you voluntarily provide to us or that we collect from other sources regarding your interests, preferences, and characteristics. We compile this information we collect about you to better understand you.	Donors Website visitors Event attendees Program participants Individuals who interact with our affiliate members Easterseals affiliate member users
Health Information. This is information about your health, disability, or medical condition which may include "Protected Health Information" (PHI).	Event attendees Program participants Individuals who interact with our affiliate members Employees and job applicants (if you choose to participate in our group health plan)
Financial Information. This includes information about your wealth and financial status, income, credit card, bank account, or payment information.	Donors Employees and job applicants Individuals who interact with our affiliate members
Location Information. This includes information about your location.	Donors Website visitors Easterseals affiliate member users
Professional or Employment-Related Information. Current or past job history or performance evaluations.	Employees and job applicants Affiliate clinical and non-clinical service providers
Internet or other similar network activity. Browsing history, search history, information on your interaction with a website, application, or advertisement.	Website visitors Donors Easterseals affiliate member users
Interaction Information. This includes information about your attendance at events we host or programs we sponsor, as well as information about correspondence with us and other ways you interact with us.	Donors Event attendees Program participants Website visitors Individuals who interact with our affiliate members Easterseals affiliate member users
Sensitive Personal Information. We may collect certain sensitive personal information including race, gender, and age information. This information is collected in aggregate form.	Employees and job applicants Individuals who interact with our affiliate members Easterseals affiliate member users

We may not collect all of the above categories of information from each category of individual who interacts with us. Please note that if you voluntarily provide us with additional information when you interact with us that does not fit one of these categories of information or individuals set forth above, we will collect the information and use it for the purposes you direct or that we disclose to you.

As noted above, in certain circumstances, we may also collect "Protected Health Information." "Protected Health Information" ("PHI") is individually identifiable health information. We sometimes collect PHI when we gather information about the effectiveness of our programs in order to understand whether a program that we or our affiliate members offered resulted in improved outcomes for the individuals or communities our programs are designed to serve.

3. How We Use Personal Information

We use personal information for our legitimate business purposes to further our mission and for other purposes disclosed to you at the time data is collected. More specifically, we use personal information in the following ways:

Provide our services, programs, and events to the communities and individuals we serve.
Send you confirmations about event or program registration, or donations.
Process donations and gifts made to Easterseals or our affiliate members.
Understand our donor base and potential donors.
Measure the effectiveness of our services, programs, and events, including services, programs, and events offered by our affiliate members.
Communicate with you about our services, programs, events, happenings, and news.
Respond to your comments, inquiries, and customer service requests.
Market our events, services, programs, and potential donor opportunities to you. You may opt-out of marketing communications at any time.
Provide you with employment, or consider you for employment with Easterseals.
Process payroll and other benefits afforded to our employees.
Improve and personalize our content and services.
Monitor and analyze trends regarding our services, programs, and events, including services, programs, and events offered by our affiliate members.
Protect against and prevent fraud, unauthorized transactions, and manage risk exposure.
Enforce our legal rights and agreements.
Comply with applicable legal requirements.
Carry out any other purpose you consent to, that we disclose to you at the time your data is collected, or that you direct us to.

We may aggregate and de-identify personal information we collect from you to understand the effectiveness of our programs, services, and offerings, as well as to understand our donor base and donor trends. When we aggregate or de-identify information, it is no longer personally identifiable.

4. How We Disclose Personal Information

Easterseals may share your personal information in the following circumstances, and as otherwise described in this Notice:

Affiliate Members. We share information with our affiliate members in order to understand and improve the impact of our and our affiliate members' programs, services, and offerings. Please see the section below titled "Easterseals Affiliate Members" for more information.
Service Providers, Vendors, and Consultants. We rely on third parties to perform functions on our behalf. Some of these service providers include marketing service providers, payment service providers who help us process donations and pay our employees, cloud storage providers, website hosting platforms, client relationship management providers, HR or employee benefits providers, and content providers. We endeavor to ensure written agreements are in place with all service providers, vendors, and consultants where feasible and appropriate. All service providers, vendors, and consultants are required to use the information we disclose to them at our direction and only for the purpose(s) for which it was disclosed to them, and they are required to adhere to security and confidentiality measures.
List Rental and Exchange Program. We may share certain information about our donors with national donor registration and list service providers in order to grow our donor base and more effectively reach current and prospective donors. If you do not wish for your information to be shared with these third parties, you may opt-out by contacting us via a method set forth in the "Contact Us" section below or by visiting our website and contacting us through a means listed on our website. If you would like to know which third parties participate in the list rental and exchange program, you may also contact us via one of the methods listed below.
Law Enforcement Agencies, Courts, Regulators, Government Authorities, or Other Third Parties. We may disclose your information: 1) to apply with a legal obligation or court order; 2) when we believe in good faith that the law requires it; 3) at the request of governmental authorities conducting an investigation; 4) to verify or enforce our policies, procedures, terms of service, and other agreements, or to protect the rights, property, safety, and security of Easterseals, our members, vendors, business partners, service providers, affiliate members, website visitors, or the public; 5) to respond to an emergency; or 6) when we believe it is necessary or appropriate to prevent physical harm or financial loss, or in connection with an investigation of suspected or actual illegal activity.
Successor Entities, Buyers, Transfers and Mergers and Acquisitions. We may disclose your information to a buyer, potential buyer, successor in interest, or to an organization in connection with a bankruptcy, transfer, merger or acquisition, or other transfer of some or all of Easterseals' or an affiliate's assets, which may include your information. If this occurs, we will endeavor to ensure that the successor entity uses your personal information in accordance with this Privacy Notice, or provides you with notice and a choice about future use of your personal information.

5. Easterseals Affiliate Members

Easterseals has a number of affiliate members throughout the United States who interact directly with the populations we serve by bringing Easterseals' mission and work directly into the community in which the affiliate member operates. While our affiliate member organizations are associated with and use Easterseals branding, they may have their own practices regarding how they collect, use, share, and retain information when you interact with them.

As described above, affiliate members share information with us, and we share information with our affiliate members. This information sharing occurs so that we can understand the impact of our and our affiliate members' programs and services, yield actionable insights, and drive future-forward decision making so that we can continue to further the Easterseals' mission of equity, inclusion, and access for individuals with disabilities.

6. Links to Other Sites

Easterseals' website may contain links to other sites, including to our affiliate members, as well as links to non-affiliated third parties, such as social networks or business partners. These linked sites may have personal information collection, use, and disclosure practices that differ from Easterseals' practices. We encourage you to review the privacy policies of websites that you visit before sharing your personal information with them. Please also be aware that if you disclose personal information, PHI, or other sensitive information through public forums, at an event, or on online message boards, this information may be used by others. We take no responsibility for the content, security, or confidentiality of any information posted on or conveyed in these public spaces.

7. Security of Personal Information

Easterseals knows that information security is of the utmost important to our donors, affiliate members, website visitors, and individuals whose information we collect. We maintain reasonable technical, administrative, physical, and organizational safeguards in proportion to the sensitivity of information we collect that are designed to prevent unauthorized access, use, and disclosure of personal information.

However, no electronic data transmission or processing of personal information is completely secure, so we cannot guarantee the security of personal information. We encourage you to assist us with securing your personal information by using a strong password and not disclosing your login credentials, where applicable, to anyone. If we become aware of an incident that affects your personal information, we will investigate and comply with all reporting obligations.

8. Transmission of Health-Related Information

Easterseals understands the sensitivity of collecting and using health-related data. It is not Easterseals' intent to collect personally identifiable health-related information or PHI. If we do collect personally identifiable health-related information or PHI, it will not be used by or shared with entities other than Easterseals or our affiliate members, unless the information is de-identified. Any transfer of personally identifiable health-related data between Easterseals organizations will take place in a secure environment with access allowed only to certain qualified employees of Easterseals. Easterseals will comply with all regulations set forward by the Health Insurance Portability and Accountability Act (HIPAA). To learn more about HIPAA, visit the U.S. Department of Health and Human Services Office for Civil Rights.

9. Retention of Personal Information

We will retain your information only for as long as necessary to achieve the purpose for which it was collected. This may mean that we will continue to retain certain information even after we stop providing our services directly or indirectly to you, after you delete your user profile, or cease interacting with us, as required by law or for our legitimate business purposes. We may also retain de-identified, aggregated, or anonymous information that does not identify a particular individual. In all cases where we retain data, we do so in accordance with limitation periods and record retention obligations that are imposed by applicable law.

10. Your Rights and Choices Regarding your Personal Information

Easterseals offers various rights that are consistent with state consumer privacy laws. Easterseals offers the option to access, correct, and delete your personal information. If you are a registered user of our website, you can access your Easterseals profile and update your contact information and user preferences by clicking here. Upon your request, we will delete, aggregate, or de-identify personal information related to you that is retained in our organizational databases, unless we are required to continue to retain the information in an identifiable format. To exercise your right to deletion, or to modify or correct your information other than through the link above, please contact us via a method set forth in the below "Contact Us" section.

You can also change your communication preferences and opt-in or opt-out of marketing communications from Easterseals. To opt-out of receiving email communications, postal mail or from participating in the list rental and exchange program, or to request a disclosure of list rental and exchange information, please follow the directions below.

Email: If you are a registered user of easterseals.com, login to change your email preferences.You may also opt out of certain non-essential marketing email communications using the "unsubscribe" link at the bottom of the email.
Postal Mail: Opt-out of postal mail solicitations
List Rental and Exchange: Opt-out of list rental and exchange program
Disclosure Request: Request disclosure of list rental and exchange practices

We will endeavor to fulfill all requests within a reasonable timeframe.

11. Cookies

Our website uses or may use cookies, web beacons, pixel tags, and similar technologies (collectively, "cookies"). Cookies are small text files stored directly on a website visitor's computer or mobile device that automatically collect certain information from users such as browser type, IP address, time spent online, pages visited, referring URL, and additional aggregated website traffic data. We also rely on partners to provide features of our services, which may involve using cookies.

We use cookies for the following purposes:

Functionality. These cookies are necessary for us to ensure that the website functions properly.
Security. These cookies are necessary for us to mitigate the risk of data breaches and similar attacks by ensuring that requests are submitted to our website from proper domains.
Authentication. These cookies allow us to authenticate user requests and to maintain session information related to users.
Preference. These cookies allow our website to remember which events you have signed up or registered for, the products you place in your shopping cart, and to recognize your device.
Advertising. These cookies allow us to provide you with more relevant advertisements.
Analytics. These cookies enable us to learn more about how users and visitors interact with our website, including pages visited, how much time is spent on each pages, and similar information. We use this information in aggregate.
Third-Party. These cookies are placed by third parties such as Google and social media networks. These cookies track and monitor how you interact with our services and other websites, provide us insight into how you interact with our website (such as analytics), facilitate account registration and login, and also enable the sharing of content from our services to these third parties. We do not control the data use or sharing practices of these third parties. If you do not wish to accept third party cookies, we encourage you to update your browser settings accordingly.

The use of cookies has become standard among website operators. Most browsers are initially set to accept cookies. You can usually set your browser to refuse cookies that are not necessary or to indicate when a cookie is being set. To understand your options regarding cookies, you can visit the help section of your web browser, or take a look at the links below:

Chrome: https://support.google.com/chrome/answer/95647?hl=en
Firefox: https://support.mozilla.org/en-US/kb/cookies-information-websites-store-on-your-computer
Edge: https://support.microsoft.com/en-us/microsoft-edge/delete-cookies-in-microsoft-edge-63947406-40ac-c3b8-57b9-2a946a29ae09
Internet Explorer: https://support.microsoft.com/en-us/windows/delete-and-manage-cookies-168dab11-0753-043d-7c16-ede5947fc64d
Safari: https://support.apple.com/guide/safari/manage-cookies-sfri11471/mac

If you refuse cookies, you may not be able to use certain functions on our website and our website may not function as smoothly as it does when cookies are enabled.

12. International Transfers of Personal Information

Easterseals and all of its affiliate members are located in the United States, and all programming offered by Easterseals and its affiliate members occurs in the United States. Because of the global nature of the internet, the Easterseals website may be accessible from jurisdictions other than the United States, even though Easterseals does not operate, provide, or market its services outside of the United States. If you access the Easterseals website outside of the United States, your information will be transferred to and processed in the United States. Since the data protection laws of various countries differ, information transferred to the United States may not be subject to the same level of protection as the jurisdiction in which you reside. If you choose to access our website from a jurisdiction outside the United States, we rely on your consent to transfer the data to the United States. To the extent you do not consent to data transfers to the United States, please do not provide us with your personal information or visit our website.

13. Information from Children

Our website is not directed towards children under the age of 13. We do not knowingly collect personal information from anyone under the age of 13 through our website without parental consent. If you become aware that we have collected personal information from an individual under the age of 13 through our website without parental consent, please let us know so that we can take appropriate action.

14. Changes to this Notice

We may update this Privacy Notice from time to time. If we make material updates to this Notice, we will endeavor to provide you notice by placing a prominent notice on this website and/or sending an email notification of the change. We will also update the "last updated" date at the top of this policy. Any changes will be effective immediately on posting unless otherwise indicated. Continued use of our services after updates to our Notice will be deemed consent to the changes.

15. Contact Us

If you have any questions about this Notice or our information practices, please contact us by emailing us through this link or directly at info@easterseals.com, calling us toll-free at 800-221-6827, or writing to us at:

Easter Seals, Inc.
Attn: Privacy Manager
141 W. Jackson Blvd
Suite 1400A
Chicago, IL 60604

Easter Seals of Southeastern Pennsylvania

Notice of Privacy Practices
For Protected health Information

This notice describes how medical information about you may be used and disclosed
and how you can get access to this information. Please review it carefully.

Easter Seals is honored that you have chosen us to provide services for you and your family. As part of providing these services, Easter Seals accumulates records and information regarding protected health information (PHI) about you and/or a family member. Protected health information is defined as any individually identifiable health information whether oral or recorded in any medium. This may include health condition, treatment plans, service outcomes and recommendations specific to a particular person.

This information helps to ensure that we provide the highest level of care in response to your family's needs and goals. We understand and appreciate that this health information is personal and confidential. At all times we desire to maintain the confidentiality of this information and to maintain the trust that you place in us.

We are providing this notice to help you understand how protected health information about you may be used and shared. In accordance with applicable laws, we also want you to be aware of your rights regarding protected health information.

Easter Seals Use & Disclosure of Health Information
As a routine part of providing services to you and/or a family member, Easter Seals may use and share protected health information in some or all of the following ways:

To Provide Treatment and Care
Protected health information about you and/or a family member help us to ensure that the services we provide are appropriate and responsive to your needs. It allows us to coordinate services where appropriate with other members of your treatment team. Health information may be shared with therapists, teachers, nurses social workers, student interns or other personnel who are involved in you or your family's treatment or services.

Health information may also be shared with emergency personnel such as paramedics or hospital staff if you or your family member requires such intervention.

For Payment
Health information about you or your family member may be shared with an organization or entity reimbursing Easter Seals for provision of services. This may include an insurance company, a county program (such as the Office of mental Retardation), an Intermediate Unity or a school district. In some circumstances, information regarding services you are going to receive may be shared in advance to secure prior approval or to determine whether these costs will be covered.

For Quality Management
Health information about you or your family member may be shared with both Easter Seals personnel and on occasion external professionals to review the treatment and care received and to assess and improve the services provided and the outcomes achieved. This allows us to ensure that we are providing the highest quality services to all families and understand the best practices that should be used to achieve the most meaningful results.

For Fund Raising
Information (limited to only your name, address and phone number) may be shared with our Development Department who might contact you to invite your financial support of Easter Seals or participation in a fund raising activity or project.

For Community Awareness
On occasion, individuals including current or prospective donors, parents interested in determining if Easter Seals is an appropriate placement for their child or other parties may tour our facilities. As a part of these tours the individual may become aware of a limited amount of protected health information. Each visitor who tours an Easter Seals facility is required to sign a statement of confidentiality.

As Required by Law
Easter Seals will disclose protected health information when required to do so by federal, state or local law or governmental agency or a court of law having appropriate jurisdiction. Information may also be shared with other oversight entities, such as an auditing firm, when we are required to do so.

At Your Request
you may request that Easter Seals disclose protected health information as part of a referral for services to another provider, as part of litigation or for some other reason. In these instances, only information that has been developed by Easter Seals and not information we may have from some other source will be disclosed. Typically you will be asked to sign a release of information form indicating the party to whom the information may be released.

Your Rights Regarding Protected Health Information
Current law provides you with several rights regarding protected health information regarding you and/or a family member. These include:

The Right to Inspect & Copy Your PHI
You have the right to inspect and copy of protected health information that has been generated by Easter Seals. Usually this includes treatment and billing records. To review and inspect information available to you, please contact the Director or Program Coordinator of the division providing the services to your family. At a mutually convenient time (not to exceed three working days) you will be able to visit our center and review your records.

At your request a copy of your information can be provided to you. A copy can be made when you review your records or mailed to you. A fee may be assessed to cover the costs involved in copying or mailing the information.

Right to Amend Your Records
If you feel that the information we have about you is incomplete or inaccurate, you can request that it be amended. To amend your records, please provide us your request in writing indicating the changes that should be made and reasons for doing so. Your request for amendment should be submitted to the Director or Program Coordinator of the division providing services to you or your family member.

Right to an Accounting of Disclosures
You have the right to an accounting of parties to who protected health information about you and/or a family member has been disclosed. Please submit in writing your request for this information to the Director or Program Coordinator of the division providing services to your or your family member.

Right to Request Restrictions on Uses & Disclosures
You have the right to restrict or limit the use and disclosure of health information about you and /or a family member has been disclosed. Please submit in writing your request for this information to the Director or Program Coordinator of the division providing services to you or your family member.

Right to a Paper Copy of This Notice
You have the right to have a paper copy of this notice if you are reviewing it in a form other than paper. to request a paper copy, please contact our Director of Programs, Kimberley Brown-Flint at kflint@easterseals-sepa.org.

Right to Confidential or Alternate Means of Communications
You have the right to request that communications with you regarding health information be done in a certain way or at a certain location. This could mean that you wish us to contact you only at work, only at home or using some specific method of communications. We will honor any written request to use confidential or alternate means of communications that we are able to do. Your written request should be as specific as possible as to the method(s) of communication to be used and should be submitted to the Director or Program Coordinator for the division providing services to you or your family member.

Right to Revoke Your Consent
If you have given us consent to use protected health information for any reason you have the right to revoke that consent to the extent that it has not already been relied upon. This might include, but not be limited to, a situation where you have allowed us to use personal information as part of our community awareness and fund raising activities but now desire that we not do so. If you desire to revoke your consent, please submit that request in writing to the Director or Program Coordinator for the division providing services to you or your family member.

Questions and/or Complaints
If you have any questions regarding this notice or if you believe that your rights have been violated, you may contact either the Secretary of the U.S. Department of Health and Humans Services or Easter Seals.

you may direct any questions or complaints regarding this notice to Easter Seals c/o:

     Kimberley Brown-Flint
     Director of Programs
     Easter Seals of Southeastern Pennsylvania
     3975 Conshohocken Avenue
     Philadelphia, PA 19131
     (215) 879-1000
     (215) 879-8424 FAX
     kflint@easterseals-sepa.org

Individuals and families will not be penalized in any manner for filing a complaint.

Changes to this Notice
Easter Seals reserves the right to change, alter or modify this notice from time to time as required by law or operating conditions. The amended notice will be sent to all individuals currently receiving services from Easter Seals and will be posted on our Website at www.easterseals-sepa.org.

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by Jeanine Johnson It’s almost 5 years exactly since I found myself writing about the kindness and k…

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It’s almost 5 years exactly since I found myself writing about the kindness and kinship of my coworkers. I had just completed breast cancer surgery and the outpouring of support was amazing. This year marked my 5^th year cancer-free. I think I would have planned a celebration around it, but my family found ourselves in the middle of a personal tragedy with the loss of one of my younger sisters. I felt little joy around anything.

I decided to commemorate my 5 years by getting a pink streak in my hair. A suggestion from my daughter Autumn.   This was a big step for me as I have never dyed my hair, but I thought, why not? I promised a coworker that I would wear a pink tutu that day. I made chocolate breast cancer ribbon-shaped lollipops and planned to hand them out to staff as they arrived. That was my plan for the day.

I arrived at work, unlocked the building, and walked to my office with tutu and lollipops in hand. I opened my office door to a sea of pink balloons. The sight caught me so off guard that I stopped in my tracks.   It took me a minute to comprehend what I was seeing. Next thing I knew tears were streaming down my face. I sat my basket and bag on the hall floor and just stared into my office. I tried calling one of my coworkers, but it was 6:30 in the morning and they were probably getting ready to travel to work. I was planning to wear the tutu just to give out lollipops but thought I needed to put it on right then since there was so much effort put into adorning my office with balloons. I moved partway into my office and noticed a tiara on the desk with a note that said, “Put me on.” So, with tears and a snotty nose, I went into the bathroom to use the mirror to affix the tiara.

As I sat at the back entrance to welcome in the staff with my lollipops, a theme started to emerge. So many people were wearing pink, including staff, children, and contractors. The greetings were warm and welcoming. Plenty of hugs and congratulations. I could not feel anything but joy at this moment. I was given a beautiful pair of breast cancer ribbon earrings by coworker Charmain and told to wear them. They did go with the whole outfit after all! The smile wouldn’t leave my face and I kept thanking everyone. It was such an unexpected and thoughtful gesture. I felt so special. My heart was light. I couldn’t have asked for more.

As if that wasn’t enough, I had no idea there was more in store. That afternoon I walked into the conference room which was filled with people. Everybody that could slip out and attend was there. A beautiful cake and a basket full of gifts were awaiting me. I was so overwhelmed I started to cry…again and ran out of the room. I just kept saying and thinking this is too much. I was dragged back into the conference room, and it took me a few minutes before I was composed enough to even speak. I wanted everyone to understand that it meant more to me than they will ever know.

The past month has been difficult for me and my family. Gestures like the ones my Easterseals’ family have extended is a reminder that there is so much to celebrate and that we should never take anything for granted, and that we are never alone in our grief or our triumphs. It was definitely a day I will never forget.

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by Jeanine Johnson In my blogs, I often write about Easterseals, the students and the miracles I see…

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In my blogs, I often write about Easterseals, the students and the miracles I see on a daily basis. Recently I have been thinking about the life coping skills we can learn from Easterseals’ students. My daughter Autumn, who is currently one of Easterseals nurses, started out as a therapy aid. She had the opportunity to work closely with the students and I believe it gave her direction in what career she would ultimately choose. She left Easterseals and obtained her nursing certification. She knew she would lean toward working with young children. The opportunity opened and she returned to Easterseals. Autumn has in the past year and a half been hit with some life-changing health issues. First, she learned she has non-diabetic hypoglycemia, then was diagnosed with Elher’s Danlos Syndrome and lastly Mass Cell Activation Syndrome) (MCAS). With each diagnosis, I watched her pivot and adjust to a new normal.

I try my best to check in to see how she is coping because, while she seems to be adjusting well, I’m sure there are days when it’s overwhelming. She went from not having any medical equipment to having to wear MAFOs and in order for her not to lose her ability to walk independently, she is required to use a wheelchair for any extensive trips. Elher’s Danlos Syndrome is a condition where your connective tissue is too stretchy and cannot support your body properly. I am relieved that Autumn’s diagnosis does not affect her heart. She was wise enough to join some forums with people who have the same conditions and has been able to get great practical advice from people who are living and functioning with various issues.

We made a video call to our favorite Easterseals graduate Mung. (You know he’d make an appearance in my blog somewhere. ) He was confused as to why Autumn used to be able to walk and can’t now. Autumn explained to him that she can still walk. She told him that it’s like his muscles are very tight (he has CP) and hers are too loose). She told him she must wear the mafos for short distances and use the wheelchair for longer outings. Autumn, Mung and I met up at the Franklin Institute for the Harry Potter Exhibit. It was Autumn’s first trip taking her wheelchair in an Uber. (She got enough good advice to pick one that would be easily portable when needed). Our reunion was as fun as ever.

We could have never guessed that Autumn’s time at Easterseals would prepare her for what has been a life-altering period. She said about the students here “They always give us perspective” and in her silly voice said “Ain’t nothing that bad!” Attitude is everything! I’m grateful for Easterseals and the students and proud of and motivated by my daughter!

I guess she gets some perks, in the picture below she is in the wheelchair-accessible section at the Elmwood Park Zoo and she’s close enough to “Kiss the Giraffe!”

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Lasting impressions
Thursday, April 14, 2022, 9:51 AM

Lasting impressions

Thursday, April 14, 2022, 9:51 AM

By Jeanine Johnson Easterseals has a way of building lasting impressions and lifelong friendships bo…

By Jeanine Johnson

Easterseals has a way of building lasting impressions and lifelong friendships both among employees and employees and the families we serve. If any of you have read my blogs in the past like here, here, here, here, and here, I periodically give updates on one of my favorite graduates of Easterseals. Since it has been a while, I thought I’d fill you in on what Mung has been up to.

Covid has put a damper on my semi-annual outings with Mung, but we have managed to stay connected. Thank God for modern technology. It was vital in helping to not feel isolated. His mom texts, sends pictures and short videos of him. I send him gifts now and again to let him know I haven’t forgotten him. It’s hard to believe that he is 10 years old already. While I really enjoyed getting the texts, I was missing the live interaction with Mung so we set up a video call with him, me and my daughter Autumn (school nurse and big fan of his). It was so great to hear his voice and see his face in real time. I am so happy to report that he is still the vibrant, outgoing character he has always been.

He immediately asked how Easterseals has been since he left. He truly misses this place. When asked how he was doing in school, he fell a little silent. So I asked if he is still talking too much in class. (He is quite the talker) He leaned his head to the side, looked at us and exclaimed “I’m really popular at my school”. Autumn and I burst into laughter (as seen in the screenshot his mother took). Autumn responded, “we know Mr. Mayor”. We talked about school, what’s going on in our lives and the prospect of getting together. I won’t lie, I always worry about our children after they leave the nurturing environment of Easterseals. It is quite a special place. It brings me much joy to see he is doing well.

With restrictions lifting and vaccines completed, I am hopeful we will be meeting for an outing sometime when the weather warms. It’s one of the things I look forward to this summer. I am so grateful that his family continues to share him with me. Stayed tuned for more updates!

FaceTime with Mung

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As One Door Closes, It Gets Decorated
Tuesday, March 29, 2022, 11:05 AM

As One Door Closes, It Gets Decorated

Tuesday, March 29, 2022, 11:05 AM

by Jeanine Johnson The work experience is so much more rewarding when you choose to become engaged a…

by Jeanine Johnson

The work experience is so much more rewarding when you choose to become engaged and part of the work community. One way I have done this besides getting to know the kids and forming awesome bonds, is by beautifying the office. When I first started working at Easterseals, I asked if it was ok to decorate. It was around the winter holidays, and I wrapped my door like a big gift. It seemed to bring joy to those around me and things took off from there.

I started decorated my door periodically. Usually, season related or to mark the start of the school year. Trying to spread positivity. These acts afforded me the opportunity to get to know my co-workers. Where one might not have necessarily had a reason to stop by and chat, the door and bulletin boards now opened up conversations. I didn’t expect it to take off as much as it did. People anticipate the door change and often ask me what I am doing next. That adds a little pressure, but it’s all good. I keep it a secret every time. Mostly because I am never sure. I have to scour Pinterest for ideas. I have expanded to decorating some of my coworkers’ doors. One casually mentioned that his door had never been decorated so of course I had to remedy that.

At minimum, my door and the bulletin board outside my office will be decorated. Though, to be honest, no undecorated bulletin board or door is safe from my handy work. If the feeling hits, it’s getting decorated!

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The Cardboard Fairy Strikes Again
Monday, September 27, 2021, 1:09 PM

The Cardboard Fairy Strikes Again

Monday, September 27, 2021, 1:09 PM

by Sue Lowenstein, MSPT, Physical Therapist Well, “The Cardboard Fairy” has done it again! She help…

by Sue Lowenstein, MSPT, Physical Therapist

Well, “The Cardboard Fairy” has done it again! She helped give another child at Easterseals a set of wings by putting her engineering skills and ingenuity to use! This time, the Cardboard Fairy tackled the issue of a walker that needed some additional support.

Let me back up a little for those of you that have not read our previous blogs (here, here and here) about the “Cardboard Fairy.” Her real name is Dorothy Hess. Dorothy is a retired market researcher who volunteers for Easterseals in a very unique way. She uses heavy duty cardboard (sometimes referred to as “tri-wall”), along with various straps, glue, PVC pipe, clips, and whatever other materials might be necessary to create custom-made adaptive equipment.

Now, let me introduce you to my student, Kayla. She is a sweet and social 4 year old girl who wears purple glasses and has a head full of curls and a smile that can light up a room. Kayla has been attending our approved private pre-school program in Levittown since September of 2020. When Kayla first started preschool, she needed a full wrap-around chest support, along with the sturdiness and width of a gait trainer, to walk. However, as time passed, she approached the point where she was outgrowing this gait trainer. While a larger sized gait trainer could have been ordered for Kayla, it would have been significantly larger and cumbersome. These gait trainers do not fold, which would make it very difficult for her parents to transport it from place to place.

As her physical therapist, I was eager to help Kayla transition to a more traditional style and smaller walker (and one that is foldable!). However, Kayla was still reliant on the full back support that the gait trainer provided her. Many attempts to have Kayla walk in a traditional reverse walker without a back support were unsuccessful. Even though Kayla was strong and balanced enough to walk with this type of walker, she craved the back support that the Rifton gait trainer afforded her. But there were no reverse walkers available on the market that came with larger back supports like the one that Kayla needed.

So I tried my best to create a custom back support. I used pool noodles (PT’s and OT’s love these things), along with some extra cardboard, tape, and cable ties to try to create a custom back support that would be mounted a traditional reverse walker. However, it did not take long for the cardboard to bend and the tape to fall, resulting in an epic fail.

I decided that this was a job for the Cardboard Fairy! With permission from Kayla’s family, and adhering to Easterseals’ COVID protocols, we were able to bring Dorothy in to sneak a peek at Kayla and my sad attempt at building a back support. Dorothy took some measurements, and left our school with the walker in her hand. Just a few short days later, what to my wondering eyes appears on my phone but a video of a lightweight but sturdy back support designed to fit perfectly onto the reverse walker. It is made out of the tri-wall I mentioned above. It snaps easily into place onto the walker, and there are two additional straps to help it remain stable and in place for Kayla when walking. It can also easily be removed to allow the walker to be folded and transported by her caregivers. And to top it all off, Dorothy painted it purple to match the color of the walker and Kayla’s glasses!!!

Kayla’s parents and Dorothy and I are thrilled to report that Kayla took to this back support and the walker very quickly, and she is now WALKING INDEPENDENTLY all around her home and in the hallways of her preschool. The Cardboard Fairy did it again…she gave another child a set of wings (this time in the form of a purple back support) so she could take off!!! Well done, Dorothy. Kayla…you keep on walking, girl!!!!

Kayla using her adapted walker!

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