July 2020 Events

July 2020 Events


July 2 at 10:00am 

Renowned speech language pathologist Uri Schneider (MA, CCC-SLP) will be doing a live video Q&A with us. What questions do you have for him? We want to make sure we use our time with Uri to respond to your needs. Post your questions for him here.


July 3

Interview with Dr. Elliot Kaminezty, Ph.D., a licensed clinical psychologist who specializes in the treatment of obsessive-compulsive disorder (OCD) and other anxiety disorders in adults and children. He is also the Founder and Clinical Director of My OCD Care. Please submit your questions for Dr. Kaminetzky here.


July 6

We will be speaking with motivational speaker John Quinn (@quinnjo), who has Cerebral Palsy.  John was diagnosed with CP at a young age. His condition resulted in partial paralysis and meant that he did not learn to walk till the age of four. As an adult he served in the United States Navy, all while keeping his CP a secret. He has written a memoir titled, Someone Like Me.  Of it, John says: “My memoir is not a military book, not for people with cerebral palsy. It’s for anyone who wants to read an inspirational story of hard work and hope.” Please ask your questions for John here.


July 7

Interview with Victoria Garrick. Victoria is an athlete as well as a mental health and healthy body-image advocate. She is a former semi-pro volleyball player and knows the stresses that athletes face. She began advocating for student-athlete mental health and in 2019 she founded The Hidden Opponent. The Hidden Opponent raises awareness for the mental health struggles of student athletes and gives them a safe space where they can share their experiences. Victoria has given a Tedx Talk, “Athletes and Mental Health: The Hidden Opponent” and has started a campaign under the hashtag #RealPost, where she encourages people to share unedited photos. Victoria's work helps to de-stigmatize mental health issues among the athlete community. 


July 13

Interview with Mindy Scheier, Founder and CEO of Runway of Dreams Foundation and Gamut Talent Management. Before starting the Runway of Dreams Foundation ​​(RoDF) in 2014, Mindy Scheier spent 20 years working in fashion on the design team for the INC collection and as a stylist for Saks Fifth Avenue.  Mindy was inspired to start RoDF after her son Oliver, who has muscular dystrophy, dreamed of wearing jeans like everyone else. After using her design skills to adapt a pair that met his needs and increased his confidence, she went on to conduct extensive research to develop modifications that would meet the needs of the largest minority in our world- people with disabilities. The clothing modifications she developed include alternate closures, adjustability and alternative ways to get in and out of the clothing. Following its launch, RoDF partnered with Tommy Hilfiger on the first mainstream adaptive clothing line for kids in 2016.  Please ask your questions for Mindy here.  


July 27

Brad and Bryan Manning from Two Blind Brothers will be stopping by to talk with us! At a young age Brad and Bryan were diagnosed with Stargardt’s Disease, which causes progressive blindness over time. As a result of their condition, they were inspired to start the clothing line Two Blind Brothers, consisting of shirts where all the proceeds go to research to help cure blindness.

Newsletter - February 2020

Letter From Our Founder

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On Wednesday, February, 5th, I had the privilege of attending the premiere of the documentary Crip Camp. ​The premiere was held at the Museum of Modern Art in New York City. Fifty to a hundred people were in attendance.​ ​Crip Camp, ​directed and produced by Jim LeBrecht and Nicole Newnham, follows a summer camp in Woodstock, NY for teenagers living with differences in the 1960s. The campers have varying differences ranging from mild to severe. Their experiences are documented, including Jim LeBrecht who has spina bifida. Jim and the other campers struggle to fit into a society that does not accommodate their needs. The camp offers a home away from home where no matter the difference, everyone fits in and has fun. The campers experiences illustrate the need for inclusion. This leads to the first protests of the disability rights movement and the Americans With Disabilities Act in 1990.

The film is moving and captures the importance of inclusion for all people with different abilities and disabilities. The film was executively produced by Barack and Michelle Obama’s Higher Ground on Netflix and won the Audience Award at the 2020 Sundance film festival. This is a must-see film.


Article of the Month

What Is Spina Bifida?

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Spina bifida is a congenial disease which occurs when the neural tube, which develops into the spinal cord and brain, doesn’t form as it should while a baby is developing. A gap forms in the spinal cord which can lead to physical and intellectual disabilities. Since the meninges, or the spinal cord’s protective case, does not form properly, the spine is unprotected and susceptible to impairment. Symptoms of spina bifida range from mild to severe, depending on the damage done to the nerves. The most common types of spina bifida are: myelomeningocele, meningocele, and occulta.[1]

Myelomeningocele is the most severe type of spina bifida. The gap in the spine expands over multiple vertebrae causing a cyst to form on the outside of the body. The cyst contains part of the spinal cord and  nerves. Depending on where the opening forms, determines the degree of the intellectual and physical disabilities. Myelomeningocele commonly affects how a person uses the bathroom; many people experience bowl and urinary incontinence. In more severe cases individuals may have loss of skin sensation or paralysis of the legs. Some individuals may also experience learning disabilities.  

Meningocele is a less severe type of spina bifida. It also causes a sack of form on the baby’s back, but does not contain any part of the spinal cord or nerves. This kind of spina bifida can cause minor disabilities such as movement disorders or bladder issues.

Spina bifida occulta, sometimes referred to as ‘closed’ or ‘hidden’ spina bifida, does not result in a sack forming on the outside of the body. In a small portion of people who have spina bifida occulta there aren’t any symptoms at all. Others may have a lump, birthmark, or a depression where the gap is  on the spine. Since the spinal cord has its protective casing, the body protects it from most damage.    

Sometimes the individual can undergo surgery to close the gap in the spine or prevent further injury from occurring. Most times the individual will need ongoing surgeries as the individual ages. The damage that occurred is irreversible but there are many therapies that may help individuals live fulfilled lives. Physiotherapy helps individuals live as independent as possible. The goal is to help with movement and prevent leg muscles from deteriorating. Using braces, walkers, and wheelchairs may also help individuals move around easier. Occupational therapy is another option for people who have spina bifida. This therapy teaches individuals how to do day-to-day activities. The activities range from learning how to get dressed, travel, use the bathroom, and how to adapt to the environment. Service animals are also an option for people who have spina bifida.   With a support system, resources, and medical treatment, people with spina bifida are able to live satisfied, happy lives.

[1] https://www.cdc.gov/ncbddd/spinabifida/facts.html


D & A Featured Story



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Back in 2010, I was 20 weeks pregnant with our third child. I'm ashamed to say I was complacent when we went into the scan room - just excited to find out the sex of our baby and not at all thinking about the possibility of anything being wrong. After a massively long time the sonographer turned off the machine and looked at us; she told us that she had seen a 'lemon' shape and a 'banana' shape which made it likely our child had spina bifida. And there it was. We knew nothing about it and to be honest the rest of the pregnancy was a whirlwind.

Angus was born, gorgeous and calm, on the 4th of October, 2010. He was whisked off to the special care unit and had his back closure surgery on day 2 of his life. We felt like the luckiest parents alive that first day after his surgery - he was truly the most gorgeous looking baby and all the nurses would fight over him in the ward. No part of us as parents ever didn't feel immense pride in him - he was just perfect to us.

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There are many resources available to people born with spina bifida and their families. Many organizations can provide transportation assistance, educational material, financial assistance, medical equipment, and legal help when needed.



Therapy to Recreation

“Your child has the physical skills of a newborn,” is never something a parent of a 1 year old wants to hear.

Given our daughter’s many diagnoses, it perhaps would have been justifiable to give up and accept what many of the experts were describing as a life of limits. A life of can’ts. However, in our case, with a lot of work and determination from many people, 12 years later, our daughter has become a rhythmic gymnast and a dancer. Erin’s current reality would not be possible if we had accepted her original prognosis.

Erin was born 8 weeks early with Down syndrome and just about every physical complication that could come with it. She had 3 major surgeries in her first 6 months and spent almost half of her first year in the hospital. When she was cleared for Early Intervention at 6 months, we began working with Developmental, Speech, Occupational, Physical, Music, and Swim therapists along with a nutritionist. She also took a weekly inclusive music class.  We immersed ourselves in Signing Time videos, and Erin had an age appropriate vocabulary—with sign language being her first language. She used an NG tube for the first 11 months of her life. She and her team worked hard. Her siblings were also expert play therapists and creatively included Erin in every activity they could. Shortly before her third birthday, Erin transitioned to the school based Early Childhood program, and a hospital based Physical Therapy program, using a walker and crawling. She was able to first walk in swim therapy with the buoyancy support.  One week after having ear tube surgery and with a candy reward system her sister devised, Erin walked for the first time on Halloween, just before her third birthday.

Sometimes the most amazing things become life changing break throughs. Looking back, we had two of those break throughs. Erin’s Aunt and Uncle sent her a rhythmic ribbon for Christmas. Nothing fancy, but Erin would play with the ribbon for hours. She would put the song, “Let it Go,” on repeat and dance and dance. I began searching for opportunities to develop this interest and found that Special Olympics offered rhythmic gymnastics. With the help of her PT at the time and her sister the dancer, Erin began applying all she learned into an athletic framework. Having mastered crossing the midline at a younger age, we hadn’t worked on it much. That is until her ribbon routine called for a figure 8. What her sister and I thought would be easy became a complex motor planning exercise months in the making. The advantage of the Rhythmic Gymnastics framework was that, while therapy isolated and made it difficult to attend extracurricular activities, a recreational based model provided socialization, confidence building, and added a skill development. She moved from being a patient to a performer. She then became involved with Unified Sports, which is an inclusive model, gaining peer modeling and socialization. This transition to a recreational based program gave her a chance to perform with her friends at a Special Olympics Gala. Her years of PT work allowed her to overcome her physical challenges and use her grace and strength to show others the possibilities.

The second break through for us came when a service dog named Cassie joined our family. At the time, Erin was using her hard-earned physical therapy work to elope. Cassie would alert us if Erin was headed out the door. Erin really did not appreciate the sensory overload of having a dog bark at her and stopped eloping within 3 or 4 months. We also trained Cassie to track Erin. This gave us great comfort and playing hide and seek with a dog was a wonderful activity for Erin and her friends. Erin also helped train Cassie, which provided fabulous leadership and speech opportunities. Cassie was a great reinforcer of ending consonants, as in “sit,” “down,” and “shake.” Cassie was great support for 9 years, taking us for walks, playing ball, and being a loyal friend. She also taught us about saying goodbye this week, as she passed over the rainbow bridge, Erin insisting she be by her friend’s side, as Cassie has been by Erin’s side all these years.

A service dog looks soulfully at the camera.

Image Description: A service dog looks soulfully at the camera.

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Our other animal partners have been the horses at the Hanson Center Therapeutic Riding Program. Horse back riding is not only good for core strengthening, but it provides a valuable connection to a beautiful creature.

To continue our transition from medical based PT to life-long recreational based exercise, we have begun working with Angela Rodriguez, owner of Kines Training and Coaching. As Angela says, “Exercise gives you confidence, makes you strong mentally and physically, makes you self-sufficient, and helps you handle every day life.” These are things I strive for myself and wish for all of my children. They are also key for achieving joy regardless of ability. Erin is currently working on yoga with Angela, improving balance and strength. The two and Erin’s sister are also working on breathing to help with focus. “Breathing brings back the focus and supports regrouping and changing your reaction,” Angela said.

Life-long fitness is much more effective when people find and do what they love. For children with special needs, doing this may require a medically-based therapy program to develop skills and strength needed to move into recreational-based programs. Therapists working with Special Olympics and other programs can help their patients continue to receive benefits long after treatment has finished.

The Cerebral Palsy Journey

The Beginning

Annabelle was born at 10:30 pm on November 1st, 2016 at 34 weeks gestation. She weighed only 4lb 4oz. Annabelle was brought into the world early by an emergency caesarean section as a result of reduced feral movements which arose due to pre-eclampsia. Pre-eclampsia is a condition which affects a small proportion of pregnant women and while the cause of it is unknown it is thought to occur when there is a problem with the placenta.

After being in and out of hospital for scans, monitoring and numerous checks for 2 weeks prior, it was decided that our little girl wasn’t happy where she was and needed to be delivered.

Annabelle was delivered breech and needed resuscitating. It took several minutes to get her to take her first breath. She was transferred to the Special Care Baby Unit with the support of oxygen. A cranial ultrasound revealed a grade 1 brain bleed which resolved prior to her discharge and she had phototherapy on day 2 due to being jaundiced. After a couple of days in special care Annabelle started to thrive and the staff were amazed at how well she was doing. Everything seemed great and Annabelle was discharged on the eighth day of her life.

The next few months everything was going well. Annabelle did battle with a cow’s milk protein allergy which caused her pain and discomfort and she also suffered from reflux causing her to vomit several times a day (which we now know was a symptom of her Cerebral Palsy and the lack of tone in her stomach muscles) but once we knew how to manage this and removed dairy from her diet, things became easier.

As first time parents you watch everything your child does, encourage them to hit their milestones and brag to your family and friends about how well they are doing. Concerns about Annabelle’s development began, however, when she was still not able to sit without assistance by 9 months old. She was also doing various things that just seemed ‘different’: for example she had strange uncontrollable movements, she favored her right arm over the left and her hands were regularly clenched in fists. We put it down to Annabelle’s prematurity but we were secretly concerned and spent hours upon hours scouring the internet to research possible causes of the signs she was exhibiting. While Cerebral Palsy was at the front of our minds, it was something that was not spoken of.


Image Description: Annabelle smiles at the camera, leaning on a book which is placed in front of her.

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Cerebral Palsy and the Diagnosis

Cerebral Palsy is the umbrella terms for lifelong conditions which affect movement caused by a brain injury or abnormal brain development, which occurs around the time of birth. Annabelle was formally diagnosed with Cerebral Palsy just after her first birthday. While the diagnoses was not a shock, it was extremely hard for us to absorb. For the past four months, we have spent time coming to terms with the diagnosis and learning about the journey which lies ahead of us.

Annabelle is still not able to sit without assistance, she is not able to crawl, she is not able to stand and she is not able to walk. All four of Annabelle’s limbs are affected as well as her trunk.  

Explaining Annabelle’s ‘differences’ to others is hard as our emotions often take over, but we are hoping that over time it will become easier.  We want to share Annabelle’s journey to help raise awareness of the daily challenges that children with Cerebral Palsy face.

Living with Cerebral Palsy

Over the last four months we have had numerous hospital appointments, brain scans (EEG and MRI) and therapy sessions, all of which have helped to put the pieces of Annabelle’s puzzle together. This support has made her stronger, but only time will tell how ‘different’ she will be. No one child with Cerebral Palsy is affected in the same way and consequently, it is impossible to predict the future.

Annabelle attends physiotherapy, speech and language therapy through the NHS who have also provided her with her Jenx Corner Seat and have ordered her a standing frame to enable her to have some mobility as she grows. Annabelle has recently benefitted from the work of two charities, Dame Vera Lynn Children’s Charity and Whoopsadaisy, both of which specialize in helping children with Cerebral Palsy and other motor disorders. They provide Annabelle with Conductive Education and also Music Therapy. Every morning Annabelle is required to do various stretches to help loosen her muscles and on a daily basis. Annabelle does therapy at home which we incorporate into play to make it more manageable and fun for her.

We are adapting to deal with the ‘different’ life Annabelle is going to live as a result of Cerebral Palsy. We know that as a family, with unconditional love for each other, we will help Annabelle to reach her full potential.

She may be ‘Different’ but she will be ‘Able’!

You can learn more about Annabelle's story on her website and on social media, Instagram and Facebook

Saving Sammy

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Saving Sammy: A Mother's Fight to Cure Her Son's OCD by Beth Alison Maloney is the story of a mother’s attempt to battle her son's diagnosis and struggle with Obsessive Compulsive Disorder (OCD). When Sammy was in sixth grade, he started exhibiting behaviors often associated with Obsessive Compulsive Disorder, such as walking with his eyes shut and refusing to bathe.

Not willing to accept the idea that her son had suddenly developed OCD without warning, Mahoney began searching for answers from doctors. She soon learned that Sammy had a an autoimmune neuropsychiatric disorder which was triggered by a streptococcal infection. Awareness of this condition, commonly referred to as PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections), has grown dramatically in recent years, and PANDAS is now recognized as a cause of sudden-onset Obsessive Compulsive Disorder in children.  The most recent research suggests that PANDAS is caused by antibodies which develop to fight strep, but which cause a reaction in the brain that results in OCD, tics, and other neuropsychiatric symptoms.  The symptoms of PANDAS usually come on quickly, are severe, and follow a diagnosis of strep throat.

Saving Sammy recounts Maloney’s journey to discover the source of her son’s sudden neuropsychiatric symptoms, which were ultimately completely cured. The books shines a crucial light on a little-known condition of which parents of young children should be aware.