Gus Gear’s Top Resources

There are so many organizations and companies out there helping change the stigmas surrounding central lines, ostomy bags, G-tubes, and other medical “extras,” as well as offering peace of mind and help to caregivers. From learning about diagnoses and caring for your central lines to increasing your knowledge of parenteral nutrition or enteral tube feeding, you can find answers to your most pressing questions through these resources.

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Organizations

AVA Foundation

Part of the Association for Vascular Access, the AVA Foundation serves vascular access patients through patient safety initiatives, multidisciplinary alliances, research, and clinician education.

ASPEN

The American Society for Parenteral and Enteral Nutrition (ASPEN) is dedicated to improving patient care by advancing the science and practice of clinical nutrition and metabolism from every facet of nutrition support clinical practice and therapies, including parenteral and enteral nutrition, research, and education.

BMJ

The BMJ’s mission is to work towards a healthier world for all. Millions of readers work in clinical practice, research, education, government, and with patients and the public. After nearly 180 years, their print edition still thrives, and has been joined by podcast, video, tweet, app, website, and live events about gut health and more.

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Caring Bridge

Caring Bridge’s vision is simple: create a world where no one goes through a health journey alone. They’ve made it their mission to build bridges of care and communication through free, personalized websites that support and connect loved ones during critical illness, treatment, and recovery.

Children’s Home of Pittsburgh

The Children’s Home of Pittsburgh, established in 1893, is an independent, non-profit licensed organization whose purpose is to promote the health and well-being of infants and children through services which establish and strengthen the family.

COG

Children’s Oncology Group, the world’s largest organization devoted exclusively to childhood and adolescent cancer research, provides important information for children and their families — from the time of diagnosis, through treatment and following cure.

Every Life Foundation For Rare Diseases

The EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit, nonpartisan organization dedicated to empowering the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development of and access to lifesaving diagnoses, treatments, and cures.

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MMIHS

The MMIHS site is dedicated to increasing awareness of Megacystis Microcolon Intestinal Hypoperistalsis Syndrome. While not all MMIHS patients require the same “accessories,” they provide support and resources for those needing ostomy pouches and central lines.

NICA

National Infusion Center Association (NICA) is a nonprofit trade association whose goal is to help decision makers understand the value of receiving provider-administered medications in non-hospital care settings and ensure that the community-based infusion center remains a safe, efficient, and cost-effective alternative to hospital care settings.

NHIA

National Home Infusion Association (NHIA)’s goal is to provide advocacy, education, and resources to the home and specialty infusion community so the patients they serve can lead healthy, independent lives. Home and speciality infusion providers coordinate the care through highly skilled professionals in a team that will often include the infusion pharmacist, infusion nurses, physician, and dietitian to help ensure the patient is receiving the best care possible.

NORD

National Organization for Rare Disorders(NORD), a 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 300 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.

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The Oley Foundation

The Oley Foundation is a national, independent non-profit 501(c)(3) organization that shares information, tools, advice, and tips for those living with home and TPN IV and enteral tube feeding. Their goal is to give members the tools and confidence they need to manage their complex therapy and enables them to achieve normalcy in their lives.

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The Phoenix

The Phoenix is America’s leading ostomy patient magazine, providing resources and support for those living with a colostomy, ileostomy, urostomy, or continent diversion (j-pouch, Kock pouch, etc.). Their in-depth articles are written by medical professionals, authors, and ostomaes that share management techniques, new products, and much more.

Camps

At the end of the day, summer camp is about experiencing everything life has to offer, and it’s a reminder to our kids that they are not their diagnoses. These safe and supportive environments offer unique experiences while still complying with the ins and outs of different medical challenges. They also provide a chance to make fond memories and lifelong friendships. Here are some of Gus Gear’s favorites, though these are only a few options. For instance, some hospitals also have their own camps, so be sure to ask about those!

Hole in the Wall Gang Camp

The Hole in the Wall Gang Camp brings “a different kind of healing” experience to more than 20,000 seriously ill kids and families annually by celebrating the spirit of childhood, the sound of laughter, and the feeling of endless possibility. All programs, both onsite in Ashford, Connecticut, and in hospitals and communities across the Northeast, are free of charge. This camp is part of Paul Newman’s SeriousFun Children’s network.

Double H Ranch

Double H Ranch is a summer camp located at Lake Luzerne, New York. The camp specifically serves kids with the following diseases: cancer, inflammatory bowel disease, neuromuscular disorders, and more with doctors and nurses onsite 24 hours a day. Kids love the indoor and outdoor pools, ropes course, archery, horseback riding and pasture, picnic and pavilion, stage area, dining hall, Arts & Crafts building, and more. This camp is part of Paul Newman’s SeriousFun Children’s network.

Camp Boggy Creek

Located near Orlando, Florida, Camp Boggy Creek gives kids the chance to fish, horseback ride, rope climb, and more. It’s a 232-acre camp for kids between ages 7-16 who’ve been diagnosed with chronic or life-threatening conditions, including severe asthma, hemophilia/bleeding disorders, cancer, gastrointestinal illness, kidney disease, transplants, and more. This camp is part of Paul Newman’s SeriousFun Children’s network.

Flying Horse

Flying Horse Farms is located in Mt. Gilead, Ohio and provides healing, transformative experiences for kids, teens, and young adults with the following illnesses or disabilities: cancer, rare disease, and more. Many of their campers also face mental health illnesses such as PTSD, anxiety, and depression. They offer kids swimming, boating, fishing, high ropes, archery, arts and crafts, and more, ensuring that everyone can participate proudly and safely. This camp is part of Paul Newman’s SeriousFun Children’s network.

Camp Korey

Named after Korey Rose, a teen who lost his battle with bone cancer at 18, Camp Korey is a 200-acre property that was once home to the Treacy Levine Center in Mount Vernon, Washington. Rose’s father founded Camp Korey in 2005 to honor his son and create a haven for kids and families dealing with childhood illness and serious, life-altering medical conditions. This camp is part of Paul Newman’s SeriousFun Children’s network.

North Star Reach

North Star Reach is a fully-accessible medical camp located in Pinckney, Michigan,. Kids who would otherwise be too sick to go to camp can experience everything that this wooded property bordered by two lakes has to offer. They say that the Observatory, a state-of-the-art health center, is what sets them apart. This camp is part of Paul Newman’s SeriousFun Children’s network.

The Painted Turtle

The Painted Turtle, located in Lake Hughes, California, offers condition-specific, week-long sessions for kids between the ages of 7-18 in Summer, Fall, and Spring. Campers participating in Limited Family Days must meet one of their criteria, including adrenal insufficiency, TPN, and more. This camp is part of Paul Newman’s SeriousFun Children’s network.

Roundup River Ranch

Roundup River Ranch offers old-fashioned camp experiences for kids with serious illnesses and their families, offering a “vacation” from being a “patient.” The Gypsum, Colorado ranch has full medical, physical, and emotional support from healthcare professionals, trained staff and dedicated volunteers, campers, and their families. This camp is part of Paul Newman’s SeriousFun Children’s network.

Victory Junction

Victory Junction offers a camp for kids from all 50 states and around the world between ages 6-16 with gastrointestinal disorders, kidney disease, and more. Their Reach program works with pediatric hospitals and Ronald McDonald Houses to support patient and family-centered care with year-round camp programming in North and South Carolina. This camp is part of Paul Newman’s SeriousFun Children’s network.

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The Youth Rally

The Youth Rally is a summer camp operated by the Youth Rally Committee (YRC) that strives to provide a positive support network that encourages self-confidence and independence for adolescents living with bowel and bladder conditions. The YRC is devoted to providing a positive atmosphere of support, learning, and personal growth for youths.

Products and Infusion Companies

Coram

Coram® CVS Specialty® Infusion Services (Coram) is a leading provider of home infusion and tube feeding therapy for more than 50,000 patients each month. With more than 35 years of experience, they’re the only national home infusion provider accredited by The Joint Commission. Beyond delivering medication, they help to alleviate patients’ fears by instilling confidence and empowering them with support, tools, and services. Some of their therapies include enzyme replacement, IV nutrition (parenteral nutrition), and tube feeding (enteral nutrition).

Hannatopia

Hannahtopia was created by a special needs mom for special needs families because “happiness is health and helps with the healing process!” Hannahtopia provides products to bring a little “happy” to children with special needs and those facing medical challenges. All of their products, like their signature NillyNoggin EEG Cap, Minky cloths, g-tube accessories, and more are designed to be fun, comfy, safe, and functional!

Nutrishare

Nutrishare is the only nationwide home parenteral nutrition pharmacy to specialize exclusively in home TPN therapy and TPN feeding. They work with The Oley Foundation to help strengthen their educational and outreach efforts.

Option Care

Option Care Health is committed to delivering high-quality, cost effective solutions to make a positive difference in people’s lives that improve outcomes, reduce costs, and deliver hope for patients and their families. They provide extraordinary care that changes lives through a comprehensive approach to care along every step of the infusion therapy process, including intake coordination, insurance authorization, resources for financial assistance, education, and customized treatments.

Soleo Health

Soleo Health is an innovative national provider of home and alternate-site specialty infusion that is fostering a culture of innovation, leading healthcare solutions, and simplifying complex care. Their team of experienced clinicians provides exceptional care in managing complex disease states through comprehensive pharmacy, nursing, education, and therapy management programs.

ThriveRx

ThriveRx’s mission is to optimize the nutritional well-being of consumers through a customized approach. Their home parenteral and enteral nutrition program offers quality care that fosters independence and empowers consumers and their families. In addition, they offer a wealth of resources to help you and your family connect with others on nutrition support, learn more about your therapy, and improve quality of life.

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The Safety Sleeper

The Safety Sleeper™ is a patented, FDA-registered, fully enclosed bed system for children and adults with special needs to provide safety for your loved ones and security for you. It is easily assembled/disassembled and portable. A number of customization options, such as multi-functional access holes for multiple types of feeding tubes, pulse-ox sensors, or monitors can further accommodate special needs.

Vitalxchange

Vitalxchange is a place focused on the exchange of vital health information to answer any question you have on your child or taking care of yourself. Their platform helps you make informed decisions and take charge of the most important asset in your life — your health.