NCHPAD Connect

The cerebral palsy research network logo overlaying a light green and white background

In our latest partner spotlight we caught up with Paul Gross, President, Chief Executive Officer and Co-Founder of the Cerebral Palsy Research Network (CPRN). Get to know CPRN and their mission to optimize the lifelong health and wellness of people with cerebral palsy and their families through high quality research, education and community programming.

What is CPRN?

The CP Research Network is the largest and most comprehensive collaboration of hospitals and community members working together to improve health outcomes for people with CP. We host the largest community and clinical registries in the US to gather robust and comprehensive data for research. We focus our research and consumer educational content on the health and wellness outcomes that people with cerebral palsy value most. We include the entire community in the research process, the development of education materials and the implementation of current clinical care pathways

How long has CPRN worked with NCHPAD?

Since January 2021.

What do you all do with NCHPAD?

We refer people from the cerebral palsy community to NCHPAD Connect for the MENTOR program.

What are some services you provide that people may not know about?

We provide education about cerebral palsy and engagement in research by the community with physician researchers.

How are you going above-and-beyond for participants?

We provide a place for them to connect with others who have CP in a private curated forum that also has clinicians available to answer questions.
We also give them multiple opportunities to participate in research as co-producers with clinical researchers or to share their lived experiences to help make a difference in the lives of people with CP.

What goals does CPRN hope to achieve for NCHPAD/MENTOR participants?

That MENTOR graduates will become lifelong learners of these well-being practices but will also engage with other community members to share the benefits of their experience with the program.

How is CPRN staying on the cutting edge in this field?

By partnering with the researchers at the University of Michigan, University of Colorado, Nationwide Children’s Hospital and Columbia, we are working with leaders in the field of adults with CP and the role of physical activity in their overall health.

What can participants expect to take away from in-person or virtual activities at CPRN?

A sense of community and that their efforts are making a difference in the lives of people with CP.

How has your partnership with NCHPAD benefited CPRN?

It creates awareness about CPRN in the field of disability as a beacon for those with CP.

How can people find CPRN and learn more about your services?

Visit us at Cprn.org.

A blue and white graphic with a photo of Bob Lujano with the NCHPAD Connect logo and the word spotlight below it

In this week’s NCHPAD Spotlight, we caught up with Bob Lujano, Expert Inclusion Specialist (EIS). Bob shared his favorite things about NCHPAD, his exploits as a medal winning Paralympic athlete and more!

How long have you been with NCHPAD?

Since 2012.

Tell us about your background & education. What brought you to NCHPAD?

I am originally from Kansas and grew up in Texas. I graduated from the University of Texas at Arlington and went to grad school at the University of Tennessee.

After graduating, my first job was in Atlanta. While in Atlanta, I would come to the Lakeshore Foundation (here in Birmingham) to play against their wheelchair rugby team. In 1998, a job opened with Lakeshore. I applied and worked with the Lakeshore Foundation until 2012. That is when NCHPAD Director Dr. James Rimmer brought NCHPAD to the Lakeshore Foundation. The CEO there asked if I wanted to be part of the NCHPAD staff even though I would be at Lakeshore, and I went for it. I worked as a recreation specialist for Lakeshore Foundation until 2011 and then NCHPAD in 2012. I am now the longest-serving Expert Inclusion Specialist (EIS) working with NCHPAD.

How long have you worked with people with disabilities?

Probably since 1991, when I started advocacy work for the Texas Department of Human Services. They went to Washington D.C. in 1991 and 1992, and I went with them to continue the advocacy work with the passing of the Americans with Disabilities Act in 1990. I was involved in marches and protests to improve accessibility for transportation, education and employment.

What program or programs do you work with? How long have you worked with that program?

Like I mentioned before, I’ve been with NCHPAD since 2012. Within NCHPAD, I’ve helped out with the MENTOR, GROWTH and Coffee Club since their foundations.

What do you do?

With NCHPAD, I have been involved with grant responsibilities that primarily include resource creation and dissemination of resources. These include calling and delivering resources to participants.

What talents or expertise do you bring to NCHPAD or this program?

Being the oldest EIS, I have been a part of every aspect of NCHPAD. I am also a Paralympian. I was on the 2004 U.S. wheelchair rugby team that won the bronze medal. I also wrote the book No Arms, No Legs, No Problem, published in 2014. It speaks about the responsibilities of NCHPAD and advocacy for people with disabilities. I am an international professional public speaker. I talk about advocacy for people with disabilities and NCHPAD. I was in the Academy Award-nominated documentary Murderball, released in 2005.

What is your favorite thing about NCHPAD?

The awesome team that starts with our directors, Dr. Rimmer and Dr. Zoe Young, on down to Penny Edwards and Alex Martinez, who lead my department. NCHPAD has a great team that is full of many people with the same passion and the goal of wanting to serve people with disabilities.

I also like having direct contact with people with disabilities because I can relate to their experiences and provide personal experiences, along with a huge variety of services and resources.

What’s your favorite NCHPAD resource or video series?

I have been responsible for helping with the ADA chats with Eli Wolf and Dr. Rimmer. I was a participant in the video of the ADA 25. Also, I helped create the Embrace Your Heart and Health video.

What are you most looking forward to in the next year?

Working with an awesome team and taking everything a step further. Providing and creating resources for people with disabilities and looking to extend what I have done to a greater capacity, advocacy and outreach. I share the same endeavors of this facility to improve the health of people with disabilities.

Share a success story. Tell us about a time when you really saw a NCHPAD program or resource working in the life of a participant.

During the COVID-19 pandemic, when we were all at home, people had to wear masks, and it was difficult to put on my N95 mask because of my disability. So, I recorded a video reel of me creating a way to wear a mask. I did a video of me putting the mask together and putting the mask on. That reel was shared by the CDC on social media, and they spoke highly of the video.

What hobbies do you have outside of work?

I’m very much involved with my church community. I participate in bible study, lectures and occasionally speak to the youth. I’m also involved in sports and activities. I have to stay active. The battle with secondary health conditions is something people with disabilities have to experience. I know I must work out and exercise.

What’s your favorite food, favorite thing to cook or favorite recipe?

Being of Mexican-American descent, anything that’s Mexican food. I love tacos, burritos, tamales and churros. I also make my own burrito meat. That’s my favorite!

What’s your favorite music, movies or tv shows?

With music, I will listen to anything that is good regardless of the genre, but mostly classic rock or old-school R&B. I love it!

Movies, I like it all. Recently, I took my granddaughter to see the Barbie movie, but I mainly did that for her. I grew up loving action and adventure films. I was also into scary films, but since I have gotten older, I think it’s probably not a good idea to watch them!

I haven’t really been into TV since Seinfeld, but I have watched Ozark and Breaking Bad. Typically, I watch sports on live TV.

What’s the last book you read? How was it?

The 1619 Project. I love it and think it’s a must-read, especially for anyone in the Southeast. I felt like it was very poignant and answered many questions for me. I think it’s an important step forward if you want an idea of why our country is the way it is. I highly recommend The 1619 Project. I also like anything from Matthew Kelly and Dr. David Anders.

Who or what inspires you?

Sports athletes, random acts of kindness and my family. My children and grandchildren are outstanding and growing so fast. And of course, my wife!

What’s your favorite quote?

“…Seek first the kingdom of God, and all his righteousness will be added unto you…” (Matthew 6:31-34 KJV). As much as I like to work out, exercise and play sports, I must have that spiritual connection with my spouse and prayer life.

If you could switch careers for a day, what would you choose?

Quarterback for the Dallas Cowboys! I also just finished a documentary on Bill Gates, and what impressed me most is that he reads 50 books a year. He said he tries to expand his mind with as much knowledge as possible. I would love to be able to do that. Lebron James, Messi and Ronaldo have also all had great careers in sports, and I would love to be that successful.

What’s one thing (not related to your job) that you could teach someone else how to do?

Wheelchair rugby. I have been doing it for 29 years and have seen everything in the sport. That includes a lot of winning and losing. I know the sport inside and out, backwards and forwards. I could mentor or coach a team.

Photo of a man in white shirt showing phone to a man in a yellow sweatshirt on a graphic that says Caregiver Tips and Suggestions below it

By Bob Lujano, NCHPAD Expert Inclusion Specialist

Being a caregiver does not mean that you must now sacrifice your health. If you have recently added the responsibility of being a caregiver for a spouse, parent, or other family or friend, please take time to take care of your own health as well.

My wife has recently become the main caregiver of my mother-in-law, but I also share many of those same responsibilities. As a person with a disability, I also have some secondary health conditions, so it’s extremely important that I pay extra attention to my health – and my wife’s health as well.

Here are some ways that I stay healthy as a caregiver:  

Me time.

Once you have made the important decision to be a caregiver, make the same commitment to have some time for yourself. There is nothing wrong with having some ME time. It is this me time that can help you become a better caregiver.

Organization.

This first step is very important when you become a caregiver. Set up a daily schedule for caregiving, and schedule a time of day for meals, exercise, sleep and activities. This can help you stay organized in order to schedule that me time.  

Accountability person.

An accountability person is someone who can cover your responsibilities as a caregiver AND check in on you. Make sure you have a backup person who can take over your responsibilities, even if it’s just an hour or two! And have regular conversations with your accountability person ensure that you are taking care of yourself.

I am that accountability person for my wife. I help her out by preparing meals and taking her to dinner. I also encourage her to take time for herself while I take care of her mother. We also play tennis and go swimming together to get some exercise and de-stress from work.

Sleep and rest.

If you have taken care of young children, do you remember the suggestion of sleeping when the child sleeps? I definitely do! This is a good suggestion for caregivers, too. There’s nothing wrong with scheduling your own sleep, naps and rest time along with the person you are providing care for. Artificial intelligence (AI) devices such as an Alexa can help with scheduling naps and activities. For people with disabilities, these devices are accessible and voice-activated.

Your health is just as important! Follow these tips and learn more about additional caregiver resources below!

Additional Caregiver Resources

NCHPAD Connect links you to free resources, communities and wellness programs specifically tailored to people with a wide range of physical disabilities. Here’s what you should know.

NCHPAD Connect

NCHPAD Connect is a valuable resource that can help you and the person you are caring for to stay healthy and well.

  • Personalized resource recommendations: NCHPAD Connect can recommend health and wellness resources tailored to the specific needs of the person you care for. This can be a huge time-saver for caregivers, as it can be difficult to know where to start looking for inclusive health and wellness resources.
  • Free, online programs: NCHPAD Connect offers a variety of free health and wellness programs that focus on mindfulness, exercise, nutrition, diet and weight management. These programs can help caregivers and the people they care for to stay healthy and manage any secondary conditions.
  •  Expert Inclusion Specialists (EIS): NCHPAD Expert Inclusion Specialists (EIS), including Bob Lujano and Cara Riggins, provide access to free, personalized resources and programs to anyone who needs them! Learn more about Cara in our recent blog.

Additional Articles

Care for Caregivers 

https://www.nchpad.org/1635/6694/Care~for~the~Caregiver

Being a Caregiver 

https://www.hopkinsmedicine.org/health/caregiving/being-a-caregiver

A blue and white graphic with a photo of Cara Riggins with the NCHPAD Connect logo and the word spotlight below it

How long have you been with NCHPAD?

Four years.

Tell us about your background & education. What brought you to NCHPAD?

I have a bachelor’s degree in health education and promotion from Berea College and a Master of Public Health from Tennessee State University. Before coming to NCHPAD, I worked at Lakeshore Foundation with NCHPAD and a few other grants. I also worked as an epidemiologist at the state health department for a few years, but my background spans federal and state agencies – primarily in the health education realm.

How long have you worked with people with disabilities?

Since I started with NCHPAD.

What program or programs do you work with? How long have you worked with that program?

NCHPAD Connect. I’ve been with it since its inception. I’m an Expert Inclusion Specialist (EIS) providing participants with tailored health resources.

What talents or expertise do you bring to NCHPAD or this program?

I’m super organized and pay attention to small details. I think small details are important for helping larger programs run efficiently.

What is your favorite thing about NCHPAD or this program?

Providing people with free health resources and things they would have had to pay for elsewhere. I like that it’s free, especially given today’s economy. It’s hard to find anything this valuable for free.

What’s your favorite NCHPAD resource or video series?

I like the Five Meals, One Bag resource. I hate food waste, and I like that this series gives people ideas for five meals in one bag. Each meal uses the same ingredients to minimize food waste.

What are you most looking forward to in this program?

Just providing people with free health resources and programs. It’s almost impossible to find anything this valuable for no cost. I really like being able to connect people to those programs.

What hobbies do you have outside of work?

I’m a plant mommy, so I enjoy taking care of them. I got into gardening at the beginning of the pandemic and enjoy that. I also love to travel and explore new restaurants in the city.

What’s your favorite food, favorite thing to cook or favorite recipe?

Anything sweet and traditional Thanksgiving foods.

What’s your favorite music, movies or tv shows?

Music: 2000s hip hop and R&B. My favorite movie is Mean Girls. TV Shows: Law and Order: SVU.

What’s the last book you read? How was it?

Room on the Broom. It’s a children’s book. I have two small kids, so I rarely read for myself!

Who or what inspires you?

My family!

What’s your favorite quote?

The will of God will not take where you the grace of God will not protect you.

If you could switch careers for a day, what would you choose?

I would be a food/travel blogger.

What’s one thing (not related to your job) that you could teach someone else how to do?

How to do their nails.

A blue and white graphic with a photo of Bob Lujano with the NCHPAD Connect logo and the words Self Care for Caregivers below it

Caregiving is a rewarding but challenging role. And as a caregiver, it’s so important to also take care for yourself.

In recognition of National Family Caregivers Month, we put together five easy tips on how to care for yourself – while caring for a loved one.

  1. Nutrition. Eating well is beneficial for so many reasons. A healthy diet can help reduce the risk of some diseases, increase your energy and ability to stay healthy, and improve your overall well-being. Focus on whole foods like fruits, vegetables, lean cuts of meat and whole grains. And a healthy diet isn’t a bland or boring! Check out our recipe videos for some great recipes that are simple, delicious AND healthy.
  2. Physical activity. Physical activity has many benefits: improved brain health, disease risk reduction, weight management, heart health and mental health improvement. It is recommended that adults get at least 150 minutes of physical activity per week. If this seems overwhelming, try breaking up activities you enjoy several times a week. Not sure where to start? Try our home workout series for simple exercises you can do in the comfort of your own home.
  3. Mindfulness. Mindfulness is a type of meditation where you focus on what you are feeling and sensing in the moment. Mindfulness allows you to slow down, be present in the moment and only focus on one thing at a time. Meditation can help reduce anxiety and depression as well as improve sleep and mood. Try to make time every day to practice some sort of mindfulness. Get started with our guided meditation series.
  4. Get outdoors. Spending time in nature can be healing for a variety of reasons. It can improve your physical and mental health, help improve your immune system illness and can even help reduce stress. Being outdoors can inspire your creativity and expose you to new things. You never know – it could become your new favorite hobby!
  5. Spend time with family. Spending time with family or people you care about can lead to stronger relationships, emotional intelligence and may provide a sense of togetherness. Studies have shown that having solid social interaction can improve your psychological well-being, may lengthen life and is good for cardiovascular health. Prioritize relationships and spend time with people who you care about!
A green graphic with the words How to practice mindfulness during the holidays on it with the NCHPAD Connect logo and an illustration of a person's head with a heart over the mind.

By Emily Hornsby, NCHPAD Mindfulness Instructor

The holiday season can be an exciting time of the year, but it can also be overwhelming. Travel, parties and events, making time for friends or loved ones, and added financial responsibilities are just a few of the stressors this time of year. If you are feeling overwhelmed by this added stress from the holiday season or just need to pause, a few simple mindfulness practices can help you pause, relax and enjoy the holiday season.

  1. Mindful pausing: Pausing for a moment or two to notice what you can perceive through your senses, moving from thinking into direct experience. 
  2. Mindful breath: Taking three breaths mindfully as an invitation to relax and create space between your thoughts.
  3. Heart hug: Gently placing your hand over or near your heart space (or imagining holding your hand to your heart) can cause the release of oxytocin, one of our “feel good” hormones. Feel or imagine the warmth of your palm on your body, and take a few intentional breaths. Over time, your body learns this response and a quick gesture will work.
  4. Self-hug: Place your arm or arms over your chest or another part of your body and give yourself a hug, or imagine giving yourself a hug. This action has the same effect as a heart hug. 
  5. Other gentle touch: Gently rubbing your hands or fingers together, placing your hand on your thigh, or placing your palm against your cheek. Some people find a light tapping with their fingers at the center below their collarbones reassuring. 
  6. Tuning into sensation: If your movement is limited, you might feel the air as it hits your skin on the face or another part of the body. Experiment to see what works best for you.
  7. Spend time in nature to become more grounded and reconnect with yourself. You may want to try leaving your phone or electronic device at home when you spend time outdoors so you connect with your surroundings. Hear the birds sing, listen to the wind blowing through the leaves on the trees, or notice birds and other animals.
  8. Practice Mindfulness Meditation to help you rest your attention on the present. Sit quietly and focus on your breath, another anchor-like ambient sound (background or surrounding noise), an object in the room, or another part of your body like your hands or feet. When thoughts, feelings and emotions come into your awareness – and they will – gently notice them. You can even name them to yourself – thoughts are here, planning is here, fear is here, anxiety is here – and then let them go and return to your breath or other anchor. It’s just like training a puppy repeatedly; you return to your breath or other anchor. By practicing mindfulness meditation, you are retraining your brain to be in the present rather than worrying about the future or ruminating about the past.
  9. Practice gratitude by either mentally noting what you are grateful for regularly or keeping a gratitude journal and writing down a few things you are thankful for.
  10. Don’t forget to do what you enjoy: Exercising, playing a sport, playing a musical instrument, listening to music, painting, sculpting, gardening, spending time with family and friends, or even watching a favorite movie or TV show are all beneficial. It’s easy to get caught up in the to-do list of the holidays and forget to do the things we enjoy. 
  11. Above all else, be kind to yourself.

Interested in more Mindfulness content? Check out our Mindfulness series on our YouTube channel.

Young adult sitting in wheelchair

NCHPAD Connect is our online registry for people with a physical disability or mobility limitation. But how does it work, and what do you get when you join? Watch the video or keep reading to learn more.

What do you get?

NCHPAD Connect links you to resources, communities and wellness programs that are specifically tailored to people with a wide range of physical disabilities.

How does it work?

First, you need to sign up. After you sign up, a member of the NCHPAD Connect team will call (from 866-866-8896) to set you up with programs and resources that best fit your needs.

How much does it cost?

NCHPAD Connect and any of our programs, resources or time with instructors don’t cost you anything except your time. It’s completely free, and we send all the tools you need to participate directly to your door.

What exactly will you have access to?

You’ll get access to individualized programs and personalized resources on mindfulness, exercise, nutrition, diet and weight management.

These programs will connect you to a team of health and exercise coaches, mindfulness instructors, nutritionists and mental health experts who will help you to navigate daily health and wellness.

With each program we’ll also send you an inclusive wellness box tailored to your individual needs.

Depending on the program, your wellness box could include anything from a water bottle or weights to a yoga mat or journal, all helping you on your health and wellness journey.

We’ll even send you free coffee and snacks when you join our NCHPAD Coffee Club.

Questions?

Have questions? Give us the NCHPAD Call Center a call at 866-866-8896.