Nominated by a devoted counselor from Family Service League, the Neikens Family is one of our wonderful 2021 Adopted Families.

UPDATE: We would like to thank our friends and colleagues who have donated and helped The Neikens family. Because of you, we were been able to make significant changes to their lives and have lifted some of their burdens. With our funds and with the generous support of in-kind donors, we have created a stay-cation spot right in the Neikens’ backyard. Because of Casey’s condition, medical bills, and the spread of COVID-19, family vacations are nearly impossible for the Neikens. Now, they can now enjoy a shaded patio, and Casey has access to a soothing jacuzzi and a wheelchair-accessible ramp from his front door.

Big shout out to Maggio Environmental, Condos Brothers Construction, Sierra Tree Service, and Ocean Spray Hot Tubs & Saunas for their generous contributions.

Casey Neikens is a 13-year-old boy who was diagnosed shortly after birth with Epidermolysis Bullosa (EB), a group of rare diseases that cause fragile, blistering skin. The blisters may appear in response to a minor injury, heat, rubbing, scratching, or adhesive tape. In severe cases, such as Casey’s the blisters may occur inside the body, such as the lining of the mouth or the stomach.

Casey was referred to Family Service League’s William Floyd Family Center for counseling in dealing with his medical condition and anxiety surrounding it.

“At times, Casey is known as the 7th grade “mayor” because of his quick wit, strong will, and knowledge of everyone. His ability to engage anyone in conversation ensures he is known by all, and those characteristics are the very ones that help him fight his disease every day.

His family has always allowed him to live each day as “normal” as possible by attending school and hanging with friends. He is also a self-proclaimed baker and foodie who will often request to be remembered if we get donated cake or brownie mix or to be the recipient of a small snack buffet after school in our office before his counseling sessions.

Despite the difficult circumstances they endure daily, I have never met a more loving, wonderful, humble, and caring family. The love and nurture I witness when I am meeting with them is extraordinary, not just between themselves but also with those around them. When assistance was given to the family during the recent holidays, Casey’s mother turned to me and said, “Isn’t there someone else out there who could use this help?” I responded, “Not anyone else in the entire world,” says his FSL counselor.

According to Beth, his mother, the family has always struggled financially but once Casey was diagnosed with EB, their world was turned upside down and the financial difficulties continue to mount. Casey needs an exorbitant amount of medical care every day just to remain out of the hospital. He has full-time nursing at home and at school. He receives physical and occupational therapies several times a week and he has the services of a full-time aide (in addition to his nurse) at school. Casey continues to receive ongoing care and surgeries as needed at Cincinnati Children’s Hospital.

A Day in Casey’s Life

A typical day for Casey begins with 2 1/2 hours of unwrapping his body cleaning his skin and treating any new blisters. Once that is done, he is re-wrapped with clean glaze bandages. The wrapping and unwrapping is extremely painful but is necessary because he is at extremely high risk for infection which could be fatal.

After his morning skincare, he is fed through a g- tube for his daily nutritional needs that are not met by his food intake. Once he comes home from a day of schooling, he rests, attempts to complete homework assignments, eats dinner, and then goes through the same 2 1/2 hours of wrapping him before he goes to bed.

The Challenges from the Pandemic

During the school year of 2019-2020, Casey had 6 surgeries to correct skin that had fused over his hands, tongue, and eyes so he can maintain their movement and use. These surgeries bring Casey an increasing amount of anxiety due to the pain of EB and then the pain of the surgeries.

Since the COVID outbreak, Casey’s family was homebound for fear of infection. His sister remained in the virtual learning classroom with Casey for fear she could potentially bring the COVID infection home to her brother. Casey’s father is an RN and was unable to work for 6 weeks at the beginning of the outbreak because there was so much unknown about the coronavirus and the potentially fatal outcome for Casey if he became infected.

Although the family has medical insurance, they struggle with the hidden cost of Epidermolysis Bullosa such as bandages, gas, hotels, food, and lodging expenses that are incurred during Casey’s trips to Cincinnati. There is no room in their budget for emergencies or typical life activities such as entertainment and vacations.

How CMM Cares is Helping

After getting to know this family and touring their home, we’ve created a “wish list” that would change the lives for Casey and his family now and for years and years to come. 

The Neikens family tends to favor “staycations” over vacationing due to Casey’s increasing pain and medical needs, especially with COVID-19 which could be tragic for Casey if he was exposed or infected. The ability for the entire family to utilize their backyard on a regular basis would increase their quality of life tremendously. Our goal is to upgrade their backyard space to create a safe, enjoyable and easily accessible sanctuary for Casey and his whole family to enjoy. Adding a handicap access ramp, a concrete walkway, and a patio large enough for Casey to maneuver his scooter on his own will provide him with some independence around his own home. We also plan to install an awning to the home to provide easy shade and protection for Casey from the sun as well as enclosing the property with a new fence to keep neighboring pets out. Also, on the wish list is adding a small hot tub and above-ground pool, as the chlorinated water provides relief to Casey’s skin. Swimming is an activity he can do with his sister and friends without pain.

CMM Cares would also like to repair the medical prep area in their home. The Neikens have a dedicated room used as a storage area for all of Casey’s nursing and medical supplies. It serves as a space for the family and in-home nurses to organize supplies, manage Casey’s requirements for the day, and keep notes on his progress. Casey spends 5+ hours per day getting his bandages tended to, and there is a nurse in the home assisting for over 30 hours per week. Not only does this space help to keep all the supplies organized in one spot, but it also allows them to “close the door and forget about Epidermolysis Bullosa (EB) for even a short time.” The space has not aged well; storage closets are broken, drawers are missing and shelves holding heavy medical supplies are warped, sagging or broken. It leaves the family no choice but for the supplies to creep their way into the rest of the family home. We will be updating this room to maximize the efficiency of the space. 

If you’re interested in helping us support the Neikens family with in-kind donations, financial support of our plans or if you know local businesses that may be interested in participating in our bringing our Wishlist plans to life, please contact Victoria at vtringone@cmmcares.org.

Nominated by the Chief Program Officer of Guide Dog Foundation, Mr. Berry and his dog Taxi are one of our wonderful 2021 Adopted Families.

UPDATE: We would like to thank our friends and colleagues who have donated and helped Mr. Berry and Taxi. With the help of our donors, we have been able to provide Mr. Berry with all of his daily meals and groceries throughout the year. We also covered the costs of Taxi’s pricey, life-saving surgery, and ensured that Taxi was returned home safely to Mr. Berry.

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Born and raised in New York, Mr. Berry is a combat veteran who served honorably as part of the Radar Force. His military journey includes boot camp in Charleston, South Carolina in March of 1965, where he transferred to the Great Lakes for school for six months. Shortly after, he worked in the Combat Information Center (CIC) for six months until February of 1968, where he left and soon become permanently disabled.

About a year ago, Mr. Berry was diagnosed with Parkinson’s disease, affecting his central nervous system, causing tremors, and severely limiting his movement. Daily tasks such as traveling, cooking meals, and taking care of household chores have become strenuous and financially burdensome.

Mr. Berry is one of seven children and has two daughters of his own. He’s also a loving grandfather and the proud owner of his beloved guide dog, Taxi.

Taxi was trained and placed with Mr. Berry through America’s VetDogs, a service dog program created to provide enhanced mobility and renewed independence to veterans. Mr. Berry describes his 9-year-old black labrador as a very loving animal with a wonderful personality.

Taxi is his number one companion in life, and all of Mr. Berry’s energy surrounds caring for him. Though America’s VetDogs gifted the dog at no cost to Mr. Berry, expenses such as food, veterinary appointments and any medical bills are up to him. Taxi is scheduled for mandatory surgery on June 22, 2021.

CMM Cares is honored to give back to a veteran who made sacrifices to protect our country and looks forward to supporting him in 2021.

How CMM Cares is Helping

We have pledged to assist Charles Berry this year in taking care of costs associated with feeding, grooming, and medical checkups for Taxi.

Though Mr. Berry only has requests for Taxi, we want to support him, too, by providing any personal wishes he has to ease his hardships. CMM Cares has purchased Mr. Berry a laptop to give him easy access to telehealth services for his own medical care, as well as finance a meal delivery plan for him to eliminate the burden of cooking.

As we continue through the year, we will support Mr. Berry and Taxi by providing various essentials and alleviating financial obligations.

If you’re interested in helping us support Mr. Berry and Taxi with in-kind donations, financial support of our plans or if you know local businesses that may be interested in participating in our bringing our plans to life, please contact Victoria at vtringone@cmmcares.org.

Nominated by a therapist from United Cerebral Palsy (UCP), the Johnson Family is one of our extraordinary 2021 Adopted Families

UPDATE: We would like to thank our friends and colleagues who have donated and helped The Johnson family. Through the funds raised, CMM Cares has been able to relieve some of her financial burdens as they focus on creating a new routine for their family. We were able to replace some of the family’s lost necessities, provided the Johnson children with new clothes for school and we supplied an iPad to allow Zarayah Johnson to attend virtual doctor visits.

Luckily, the Johnsons were able to move out of a crowded homeless shelter and into an apartment. We furnished the apartment with a new air-conditioning unit and provided Ms. Johnson with gift cards to cover her travel expenses to the children’s school and Zarayah’s doctor appointments. Thanks to our supporters, we’ve helped Ms. Johnson and her children get back on their feet and back to making memories as a family after this tragic, unforeseen event.

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Could you have survived the COVID-19 pandemic without a home? The Johnson family was suddenly faced with this question when their home was destroyed in an electrical fire on Christmas day. Ms. Johnson and her three young children were forced to relocate to a crowded shelter mid-pandemic.

On top of feeling the devastating loss of their home, furniture, and personal belongings, Ms. Johnson struggled with helping her seven-year-old daughter, Zarayah, cope with her Cerebral Palsy symptoms. Having been suddenly uprooted and thrown into an unfamiliar living space posed a set of unique challenges for Zarayah and her siblings.

Ms. Johnson and her children now live in a one-bedroom apartment in Brentwood, but their troubles are far from gone. A single mother, she is tasked with travelling across Long Island for her children’s daycare and her daughter’s medical services. On top of this, she has been attempting to guide her children through the unexpected transition to online learning over the course of the pandemic.

How CMM Cares is Helping

While we can never replace the memories that the Johnson’s made in their family home, at CMM Cares we have pledged to devote our efforts to ease their burden. First, we want to supply them with the basic necessities that they lost. Thanks to our donors, we’ve purchased new summer clothing for the three Johnson children, a portable air conditioner for their rental home, and a new iPad to help Zarayah work with her Cerebral Palsy therapist remotely. We’ve covered the costs of bills and provided Ms. Johnson with gas gift cards to help her stay afloat. At CMM Cares, we’re hoping to get Ms. Johnson back on her feet after these traumatic events, and back to making memories with her three doting children.  

If you’re interested in helping us support the Johnson family with in-kind donations, financial support of our plans or if you know local businesses that may be interested in participating in our bringing our Wishlist plans to life, please contact Victoria at vtringone@cmmcares.org.

CMM Cares, Inc., a 501(c)(3) and major supporter of veterans, children, and the arts on Long Island through fundraising, volunteering, and awareness campaigns, is pleased to welcome Peter J. Klein, CFA, CRPS, CAP, and Alan R. Sasserath, CPA, MS, to its Board of Directors. With the addition of two of Long Island’s most respected business leaders to its Board, CMM Cares is poised to make an even more significant impact in 2021 for the communities we serve.

Peter J. Klein is the Chief Investment Officer and Founder of ALINE Wealth. A published author with deep financial experience, Klein also brings considerable acumen in philanthropy, helping clients navigate family trusts, institutions, and nonprofits. He was named to the Forbes 2020 list of the Best-In-State Wealth Advisors in New York and his practice was named to WealthManagement Magazine’s first annual Thrive Awards list of fastest-growing financial advisors in 2019. Klein is very active in his community and is the recipient of numerous philanthropic and leadership awards. His focus on the nexus of wealth management and philanthropy will shape his service on the CMM Cares Board.

Alan R. Sasserath is a Managing Partner at Sasserath & Co., a premier firm providing accounting, tax, and financial management services to sophisticated businesses. He brings over 30 years of public accounting firm experience to his role with CMM Cares. With his strong background in accounting, tax, audit, and financial planning and his experience taking both Long Island and international businesses to the next level, Sasserath brings critical technical expertise to CMM Cares’ philanthropic efforts. 

As CMM Cares has grown from a handful of volunteers to a recognized nonprofit organization, we are pleased to grow our Board of Directors. CMM Cares will continue to bring the business community together for the greater good in 2021 and invest in initiatives that make a difference in the communities around us.

We would like to thank our friends and colleagues who have donated and helped our 2020 Adopted Family. With your generous support, we have helped Kyria Landry and her family begin to move forward.

Through the funds raised, CMM Cares has been able to relieve some of her financial burdens as she focuses on creating a new routine for her family. We covered costs for back to school clothing essentials, classroom supplies, and virtual learning support with Chromebooks for both girls. We’ve made sure Kyria has been able to babyproof her home for a curious toddler and preschooler and sent over care packages with everyday basics.

Kyria and Anthony both had dreams of continuing their education and earning their bachelor’s degree, and we are happy to share that amidst the turmoil of losing her fiancé, Kyria has decided to pursue her goal. She will be attending a 3-year accredited program, and with help of CMM Cares, she will have the technology she needs to succeed. Kyria will take virtual classes in addition to working and raising her children.

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Meet Kyria, Ajaleiyah, Avery, Mariah and Arlo

Here are Kyria Landry and her sweet children. On the morning of July 8th, their whole world was turned upside down. Kyria and her fiance, Anthony Edwards, had driven to Florida for the funeral of his grandfather, who had died suddenly of a heart attack. On that very day that Anthony said his final farewell to his grandfather who had raised him, Anthony was struck by a car and killed. He had just celebrated his 32nd birthday a day before.

Now, instead of celebrating their planned wedding nuptials, Kyria is facing the responsibility of raising and providing for her family as a single mother while mourning the loss of the love of her life. Anthony leaves behind Kyria, his two sons, and his two beautiful girls, though not his biological daughters, he loved them unconditionally as his own. 

This is Ajaleiyah and Avery. Ajaleiyah is a 13 year-old girly-girl who loves cheerleading, watching movies, and shopping. Avery is a sweet, soft-spoken 4-year-old who looked up to his dad. He loves superheroes, dinosaurs, and Nerf guns. 

This is Mariah and little Arlo. Mariah is turning 11 years old on Halloween. She loves karate, drawing and cooking. The youngest of the bunch is the almost 1-year-old, Arlo. Arlo is an easy-going baby who loves dinosaurs and trucks and just recently learned to explore the world around him on 2 (wobbly) feet. 

We had the pleasure of spending an afternoon with Kyria and her children during a Cares planned family photoshoot at Waterdrinker Family Farm in Manorville, courtesy of Robert Frey of Mind State Media. Though it was bittersweet to be taking family pictures without Anthony, it was a wonderful experience for them. We hope these incredible photos will be a lasting reminder of the beautiful family that they’ve created. 

In getting to know Kyria, it’s clear that Anthony and Kyria brought out the best in each other. They inspired each other to be better people, believed in each other, and encouraged one another. The positive energy between them created an environment of stability and security within their relationship and their family. They were there for each other during tough times and always focused on creating a life of love and laughter.

As Kyria focuses on helping her children cope with the loss of their father, we hope that with the generous support of our friends and colleagues, CMM Cares can relieve as much financial burden on her as possible as she navigates through this tragic time.

Together, we can make a big difference for Kyria’s children. We are grateful for every person and organization that helps to give this family the future they deserve.  

On November 18, 2019 CMM Cares was thrilled to receive the Corporate Leadership Award at Family Service League’s Great Chefs Gala in recognition of our support of our neighbors in need. Accepting the award on behalf of CMM Cares, Christine Malafi told a personal story of how she was inspired to join FSL’s board when she met a wounded veteran who relies on FSL’s food bank and had shared how much the organization meant to him. We also congratulate NYS Senator Phil Boyle, recipient of the Government Leadership Award, and we thank NYS Senator James Gaughran, who presented the firm with a Proclamation honoring our service to the community and New York State.

Early this month, our team spent time volunteering with children at Family Service League. We read a book to the children and helped them create a fun craft. The children were thrilled to spend some time with new people, and our time with them was very rewarding. CMM Cares has been collecting books to distribute to FSL’s preschool classrooms, and we’re proud to share that we collected more than 200 books!

In the fall we volunteered with America’s VetDogs, whose mission to restore independence and dignity to veterans touched us deeply. CMM Cares collected treats, toys, towels, cleaning supplies, and more to support these incredible service dogs and the brave individuals whose lives they change.