12th International NBIA Disorders Association Family Conference

CONFERENCE REGISTRATION IS NOW OPEN!

Please join us for the 12th International NBIA Disorders Association Family Conference May 18 to May 21, 2023, in Houston, Texas.

The nation’s fourth-largest city, Houston, is the biggest city ever to host our family conference. It will be at the Hilton Houston Post Oak by the Galleria, 2001 Post Oak Blvd. The hotel is nicely situated, with easy access to airports, shopping and restaurants.

Our family conference is open to all NBIA families, members of the medical and research community, and anyone who is interested in learning more about NBIA disorders.

We will be holding disease-specific pre-conference clinical sessions on Thursday during the day for PKAN, BPAN and PLAN families. MPAN and FAHN clinical sessions will be on Friday. NBIA families will have the opportunity to ask clinical questions via a survey that will be sent to them after they register. These questions will be addressed in the clinical session for that disorder.

Also on Thursday in the late afternoon, we will be holding a session for newly diagnosed families and those that have never attended an in-person family conference to share and learn what to expect from the coming weekend.

Our kick-off dinner on Thursday evening from 6:00 – 9:00 pm will bring everyone together for a “Getting to Know You Activity” on this first evening together.

Attendees at our sessions on Friday, Saturday and Sunday will hear the latest research news and possible therapies for NBIA individuals. We will have general sessions for all attendees along with breakout sessions on Friday afternoon, which will allow attendees to choose sessions of interest that cover a variety of meaningful topics relevant to NBIA disorders.

Our family picnic on Saturday afternoon is at Fire Truck Park. It is about 4 miles and a 9-minute drive from our hotel. We will have transportation for those who do not have a car. We will take a group photo wearing our conference t-shirts and play games at this fun social time for our families.

On Saturday evening we will have a dessert social with our Silent Auction and end the night with a DJ and dancing. On Sunday morning we will have sessions for NBIA adult individuals, siblings and caregivers, along with other general sessions, and then conclude with our closing ceremony sharing video highlights and a community art activity inspired by our conference theme, along with a special song performed by a BPAN family who have a band called Mystic Roots.

 

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Conference Registration

 Conference Program

 

Fees include materials, dinner on Thursday evening, 2 lunches, coffee and tea breaks, a Saturday night dessert social and child care during sessions.

• $175 per person

• No charge for NBIA individuals or children under 7 years old

REGISTRATION FORM

 

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Hotel Reservations

2001 Post Oak Blvd.

Houston, Texas, 77056-4401, USA

+1 713-961-9300

The Hilton Houston Post Oak by the Galleria has created a special website for our group making it possible for participants to easily reserve a room. The cost is $139 a night (plus $23.63 per night in taxes) for either a king or queen room. There are 12 handicap-accessible rooms on a first come, first served basis with 5 having roll-in showers at the hotel. At this time there are only king handicap accessible rooms still available as the others have been booked by NBIA families.

Rooms can be reserved at our group rate for up to 3 days prior and 3 days after the conference if available. If the days you need are not showing on our dedicated website, you should call the hotel to handle your reservation. The cutoff date to reserve a room at the $139 rate is April 23, 2023. Please don’t delay in making your reservation, as we have a limited amount of rooms reserved at this price.

The room rate includes complimentary WIFI and discounted overnight self-parking at $10 per night. Each room includes a small refrigerator. The hotel has an outdoor pool, a 24-hour fitness center, 2 restaurants and a bar. A complimentary breakfast buffet is not included at this hotel so you will be on your own for this meal. There is a Whole Foods Grocery down the street from the hotel if you wish to purchase food to put in your room refrigerator.

The hotel is half a mile from the shops and restaurants at The Galleria – America’s fourth-largest mall – and three miles from Memorial Park and the Houston Arboretum and Nature Center. Downtown Houston is seven miles away.

 

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Conference Care Room Information for Children, Teens and Adults

 

Care Room Information Form

 

There will be no on-site child care registration, so please be sure and register everyone who will be in the care room on any day by filling out the Care Room Information Form and sending it in as part of your conference registration.

Hours*

Thursday, May 15 (pre-conference)

8:15 am – 10:15 am Only PKAN families attending clinical session

11:15 am – 1:15 pm Only BPAN families attending clinical session

2:15 pm – 4:15 pm Only PLAN families attending clinical session

 

Conference Days

Friday, May 16 8 :00 am - 12:15 pm & 12:45 pm - 6:15 pm

Saturday, May 17 8:30 am - 12:15 pm

Sunday, May 18 8:45 am - 11:30 am

 

*Hours care room is open may vary slightly if the conference schedule changes

The care room is nearby the ballroom where general sessions will be held. Those who cannot sit still and be silent must be in the care room during sessions. There is no age limit for those in the care room and all NBIA individuals are welcome. A liability waiver is required.

Those in the care room can look forward to participating in space-themed activities and fun games that will be designed for a variety of differing abilities. On Sunday, Partners In Dance will offer a short performance, followed by “Just Dance,” which is a dance video game in which the group follows along.

We will have TV/DVD available for movies. Please bring favorite movies to share, along with any favorite games or toys.

Volunteers and the nurses in the care room will not be responsible for tube feedings, diaper changes, suctioning or other medical procedures.

Those in the care room will be with their families for dinner on Thursday, Friday lunch, dessert social on Saturday evening, and for our community art project and music performance on Sunday morning as part of our closing ceremony.

If you have a family member that would like to sign up for a volunteer shift in the care room, please note their name and either their cell phone or email address so that we can contact and schedule them for a date and time slot. If you have someone who wishes to stay in the care room with the NBIA individual, please let us know that also.

 

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Transportation

 Flying

Houston Intercontinental Airport: 28 miles to the hotel

William P. Hobby Airport: 17 miles to the hotel

There is no hotel shuttle from either airport. A Taxi, Uber, or Lyft will cost approximately $40 – $75 depending on the time of day, availability, and how long you are willing to wait for pickup.

The light rail system’s METRORapid Silver Line runs along Post Oak Boulevard in dedicated lanes and has a stop about 350 feet from the entrance to the hotel. The metro has wheelchair accessibility with a fare of $1.25 for three hours. It goes to the Galleria and other places of interest, with service every 12 minutes. It is possible to transfer to a city bus that goes to the airport and other locations.

 

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NBIA Conference Scholarships 

We will be offering conference scholarships to help some who otherwise couldn't attend. For those wishing to contribute to our scholarship fund and help a NBIA family attend, you can do so here.

Depending on how many apply and how much our donors provide, we hope to help applicants by waiving registration fees and reducing their hotel costs. Other travel costs are not covered.

Scholarship Application

Applications must be received no later than March 15.

 

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Medical Conference Tax Deduction Information

 

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Conference Sponsors

 

ELITE SPONSOR

TITANIUM SPONSOR

AND

Thanks to our sponsors for helping to make this conference possible. To date we have CoA Therapeutics, Inc as an Elite sponsor, Sydney’s Song & BPAN Tribe as a Titanium sponsor, Chiesi USA, Inc., INADcure Foundation and Space City Dawg Pound with Monica and Christian Mitchell are Platinum sponsors and Gold sponsors are ALJ Lindsey, LLC, Nichols Crane Rental and Robert Stephen Consulting, LLC. We also thank our Silver, Copper and Bronze sponsors.

We need conference sponsors to help us defray costs. We expect this conference to be our most expensive gathering ever. We strive to keep registration fees low, and sponsorships help make that possible.

If you know an individual or company that might be interested in sponsoring, please share our sponsorship letter and sponsorship information form with them.

We have a form and sponsorships for $10,000 and under here, with payment by credit card. Potential sponsors are welcome to contact Amber Denton by email atadenton@NBIAdisorders.org with any questions.

 

 

Sponsorship Opportunities

Sponsorship Letter

Sponsorship Submission Form

 

Family conference ReUnites NBIA community in-person

Our first in-person family conference since the pandemic lived up to the gathering’s theme, “ReUnited.” Families who have been coming for years were excited to see each other again, while we welcomed 27 new families to our 12th International NBIA Family Conference in May.

In all, 70 families from four countries traveled to Houston, for a total of just under 200 participants, including 49 NBIA individuals.

The event got underway May 18 with clinical meetings for BPAN, PKAN and PLAN. A kickoff dinner followed that night. A panel of experts answered pre-submitted questions at each of the clinical sessions and discussed how best to take care of affected individuals. MPAN families had their clinical meeting on Friday morning. Many of these experts were present throughout the conference so families had opportunities to get to know them and ask questions.

Panels of experts answered questions at the BPAN, PKAN, and PLAN clinical sessions on Thursday.

The clinical meetings included local Houston clinicians and two clinicians from Children’s Hospital of Philadelphia (CHOP) who see NBIA patients in their practice. The two CHOP physicians spoke at our Friday sessions.

Social time was built into the calendar before more intensive issue-oriented sessions started on Friday, including time for families with a newly diagnosed loved one and those attending for the first time to hear about what they should expect during the weekend.

Blood samples, dried blood spots, and skin biopsies were collected at the conference for the NBIA biorepository at OHSU.

 

 

 

Also on Thursday and Friday, the NBIAcure team from the Oregon Health & Science University collected a record number of biological samples for study from NBIA individuals, unaffected carriers and healthy individuals. These samples included skin biopsies from 35 individuals and blood samples and dried blood spots from 102 people for the NBIA biorepository at OHSU. Care room volunteers also generously donated blood and tissue to serve as part of a “control group” for future scientific studies.

Allison Gregory, a genetics counselor at OHSU, said, “Control samples are difficult for us to get, especially for skin, so we really appreciated those who stepped up to do this.” She added: “All the samples will be housed in our NBIA biorepository to be used for both current and future experiments. The importance of processing and storing samples like these is that we can pull them and use them years later, when a new research question comes up. Similarly, we can share de-identified samples with collaborators.”

 

Friday was packed with sessions covering topics for everyone in our main ballroom, followed by afternoon breakout sessions. A popular session was our disease-specific sharing sessions for the families to exchange information, show support and offer solutions to everyday issues.

 

Friday’s sessions ended with a memorial tribute to NBIA individuals no longer with us, but never forgotten. A violinist played as volunteers carried a rose and announced the name of an individual we have lost to NBIA. They placed the rose on a table decorated with candles and pictures of those no longer with us. Surviving family members in attendance were invited to say a few words about their loved ones.

Saturday morning featured disease-specific research updates. Nineteen speakers addressed the four main NBIA disorders: BPAN, PKAN, PLAN and MPAN. Most of the talks were recorded for the public unless the researcher had information that could not yet be disclosed. You can find the talks at our conference website link.

We also awarded our first Center of Excellence designation to Oregon Health & Science University. In addition, I announced my decision to step down as president effective Sept. 30. Amber Denton, a board member and chair of our development committee, will be our next president.

The rest of Saturday was devoted to fun. We picnicked at the nearby Fire Truck Park where we enjoyed lunch and games and took our conference group photo. That evening, we enjoyed a dessert social with ice cream sundaes, more sweets and dancing. We partied until the music stopped at 11.

Sunday morning featured sessions for NBIA adults, siblings and caregivers. The conference closed with an art project we created together, followed by a video and slideshow of conference highlights.

In all, the conference had 41 speakers. You can find a link for recorded sessions, along with descriptions here. The closing ceremony is included.

We are grateful to our Family Conference Committee led by co-chairs Amber Denton and Jennifer Sanchez, who did an outstanding job, along with committee volunteers and members of the Development Committee.

Especially noteworthy was the care room, which visitors deemed the most entertaining one ever. It included a space camp put on by Lone Star College Occupational Therapy students and Story Time with Princess Belle. Children took advantage of having a photo op with Cinderella, and an adaptive dance team performed. A “Just Dance” party followed. These activities set a high bar for care rooms at future conferences.

Amber Denton and Jennifer Sanchez, conference co-chairs, outside the care room with its space camp theme.

Story Time with Princess Belle was a big hit in the care room.

 

None of this would have been possible without our conference sponsors who donated $67,380 to help us manage increasingly expensive costs. CoA Therapeutics was our Elite Sponsor. Our Titanium Sponsor was Sydney’s Song & BPAN Tribe, which is made up of Amber Denton’s family and other Houston NBIA families. Another 15 sponsors provided support, and all are acknowledged on pg. 26. 

Thanks also to the donors who supported our scholarship fund to the tune of $8,856. This covered hotel rooms and registrations for nine families, making it possible for them to attend, including several from other countries.

Additional revenue of $29,789 came from registrations, merchandise sales and silent auction and raffle items contributed by our families.

Conference expenses of $120,226 exceeded revenue by $12,838. We made up the difference with general fund monies earmarked for family support.

We are already looking ahead to 2025 and will keep you informed when a date and site are chosen for our next family conference. 

 

 

 

Conference Articles

  Keynote Speakers

  BPAN Research Updates

  NBIA Research Overview

 2023 Family Conference Sessions

Many of the sessions at the 2023 NBIA Family Conference were video recorded. Click on the button below to view a playlist of the available videos on our YouTube channel. You may select the videos you would like to watch from the playlist.

View Conference Sessions

Description of Recorded Sessions

2023 Family Conference Closing Ceremony Video

2023 Family Conference Photo Montage Video

2023 Family Conference Photo Galleries

See photos from the conference sessions, events, and activities:

View Conference Photos

View family photos, and group photos by NBIA disorder, State and Country:

View Group & Family Photos

We are grateful for our sponsors.

ELITE SPONSOR

TITANIUM SPONSOR

AND

PLATINUM SPONSORS

Chiesi Global Rare Diseases

INADcure Foundation

Space City Dawg Pound with Monica & Christian Mitchell

GOLD SPONSORS

ALJ Lindsey, LLC

Nicols Crane Rental

Robert Stephen Consulting, LLC

SILVER SPONSORS

Calix Holdings, LLC

Suzanne & Norman Cohn

Mark & Martha Nell Richards

Murdock Family

Pyramid Logistics

COPPER SPONSORS

Burke Family

Chico's Best

CW Industries

Victoria Stapleton

October 2020 – April 2021

Maria Buchkovich
February 8, 1978 – December 18, 2020

Anthony Mirabella
January 4, 1974 – January 27, 2021

Nessa Williames
April 7, 2003 – February 5, 2021

Keri B Patton
February 19, 1986 – February 7, 2021

Makenzie Elisabeth Rybarski
June 22, 1995 – February 13, 2021

John Luke Pitcock
December 3, 2013 – March 20, 2021

May 2020 – September 2020

Kaylee Madalene Estrada
March 31, 2014 – August 7, 2020

January 2020 – April 2020

Radhika Goel
July 11, 2000 – January 3, 2020

Liam Longo
March 4, 2003 – January 11, 2020

Emily Spencer
February 5, 1986 – February 9, 2020

Charles Ejiegbu
October 21, 2009 – February 12, 2020

Jason Michael Townsend
July 7, 1981 – April 29, 2020

 

 

To view photos from the events, please CLICK HERE.

 

Patricia Wood, President & Founder

 

Kevin Flynn, Cincinnati City Council Member

 

Cheryl Lamos, NBIA parent

 

Dr. Susan Hayflick, Director –Scientific & Medical Advisory Board

 

Veronica Bonfiglio – Board member

 

 

 

Click on any of the thumbnail images to view in a larger size. You can also view a photo gallery of gala and picnic pictures on our Facebook page at https://www.facebook.com/NBIADisorders.

To view videos from the gala, please CLICK HERE.

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Dear Friend,

The day you learn that you or a loved one has an NBIA Disorder might be the worst day of your life. We understand because we’ve been there. Take heart; you have come to the right place. The NBIA Disorders Association is dedicated to finding a cure for these rare disorders and supporting you in this challenging journey. Welcome. We are glad you found us.

We represent a group of families and researchers who are an excellent resource to those facing a diagnosis of NBIA. You no longer have to cope with this alone. From all over the world, NBIA families communicate with each other through our various support programs.

We can help you:

• Understand the diagnosis and symptom management options
• Keep updated on research efforts
• Connect with other families that truly understand what you are going through
• Receive expert clinical care and guidance through our NBIA Centers of Excellence

Getting Started:

• Fill out our Connect With Us form so that we can add you to our NBIA families database. This enables us to contact you with information of special interest, such as upcoming clinical trials, new research findings, family conference schedules and other important news.
• Read the articles especially for the newly diagnosed provided below and explore the other areas of our website when you are ready. This information will provide the tools you'll need to manage the disorder as much as possible and cope on a day-to-day basis.
• Read our Overview of NBIA Disorders to get a better understanding of what NBIA disorders are and the common characteristics they share. Read the specific disorder information provided to learn about the particular NBIA disorder that affects you or your loved one.
  • ◦ BPAN
  • ◦ PKAN
  • ◦ PLAN
  • ◦ MPAN
  • ◦ FAHN
  • ◦ CoPAN
  • ◦ Aceruloplasminemia
  • ◦ Nueroferritinopathy
  • ◦ Woodhouse-Sakati
  • ◦ Kufor-Rakeb
  • ◦ Idiopathic NBIA
• Join our Family Networking Program, Facebook group and Facebook page for even more support. These programs put you in touch with other families and enable you to ask questions about treatments and other matters. You can learn from others how they cope with a rare disorder and care for their loved one.
• Fill out our Questions and Comments form relating to this new diagnosis.

We welcome you and your family to our NBIA Community and hope that we can meet your needs at this difficult time of learning about and accepting an NBIA diagnosis. Right now, your life has been up-ended. But as time passes, a "new normal" evolves, and we can help you reach that stage, too.

There is hope through research. The NBIA Disorders Association is working every day to promote research seeking a treatment or cure for all of our NBIA disorders. Please join us in our quest and let us know how we can help.

Sincerely,

Amber Denton
President

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Questions & Comments

We welcome you and your family to our NBIA Community and hope that we can meet your needs at this difficult time of learning about and accepting an NBIA diagnosis. Please contact us if you have questions or comments relating to this new diagnosis.

Ask Us

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20 years old! We danced, picnicked and made new plans.

Members of 23 NBIA families from around the country, along with longtime researchers and supporters, helped the NBIA Disorders Association celebrate 20 years of accomplishments and set the tone for the future. It was decidedly hopeful.

Our 20th anniversary celebration included a dinner gala Aug. 6, a family picnic the next day and a meeting with NBIA families, researchers and board members on Aug. 8.

The sold-out gala, held at a Covington hotel, provided sweeping views of the Cincinnati skyline while the 127 guests had the opportunity to dine, dance and donate money to advance our organization’s work in the coming years.

Many thanks to our generous donors and our event’s premier sponsor, Retrophin, Inc., a company working on an NBIA drug. Retrophin donated $25,000 to underwrite the cost of the anniversary weekend.

We also deeply thank Cincinnati City Council Member Kevin Flynn, who spoke at the event about living with a disability and presented a city council resolution declaring it NBIA Disorders Association Day on Aug. 6 in Cincinnati.

 Others also freely gave of their time to make the gala a memorable evening. We are grateful to our emcee, Barrett Cohen, and DJ Ron Schumacher, who kept us dancing until midnight.

At Sunday’s picnic, the Northside Knights of Columbus graciously donated and cooked burgers and hotdogs with all of the fixings, including homemade desserts.

On Monday, Aug. 8, we concluded our anniversary weekend with a meeting at which families, researchers and our organization’s board discussed future research priorities.

You can view a photo gallery of gala and picnic pictures on our Facebook page at https://www.facebook.com/NBIADisorders.

View Photos from the Events

Watch Videos from the Gala

The following links from other sources provide information on topics related to NBIA and rare disorders, including assistive technologies, travel with a disabled family member and more. Using the links on this page will cause you to leave the NBIA Disorders Association website. The Association does not endorse or guarantee the contents of these links, although every effort is made to ensure their appropriateness and suitability. These links are provided only as a service.

Please let us know if you find a link that has moved or is broken. You may suggest sites for us to add that you feel would be valuable to others as well at info@NBIAdisorders.org.

 

Assistive Technology

http://www.abledata.com - Assistive Technology Information 

http://www.ataccess.org - Alliance for Technology Access - this is a network of community bases resource center, vendors, and developers providing information and support services to children and adults with disabilities.

http://www.austin.ibm.com/sns/ - IBM Special Needs Systems - this site offers information, files, and utilities available for downloading.

http://www.closingthegap.com - Closing the Gap - this organization promotes computer technology for people who have special needs.

http://www.resna.org/ - RESNA Technical Assistance Project - contact regarding nationally funded state assistive technology programs.

https://www.retailmenot.com/blog/assistive-technology-buying-guide.html - Here’s your guide to everything you need to know about buying assistive technology smartly, so you aren’t left holding a big bill at the end of the day.

https://www.vantagemobility.com/dealers/ - VMI Dealer Network offers valuable information that your readers may find useful information on Wheelchair Accessible Vans. 

http://www.childrenssoftware.com - Children's Software - this site offers links to reviews of children's software, for parents and professionals.

 

Clinical Trials/Genetics/Research

http://clinicaltrials.gov - NIH clinical trials. Features information on more than 4,000 federal and private medical studies involving patients and others at more than 47,000 locations nationwide.

http://ghr.nlm.nih.gov - Genetics Home Reference provides information on genetic conditions.

 

Education

https://www.accreditedschoolsonline.org/vocational-trade-school/people-with-disabilities/ - The following guide highlights the benefits of vocational education, potential careers, and laws that protect both students and employees with disabilities.

http://www.affordablecollegesonline.org/college-resource-center/resources-for-students-with-disabilities/ - specific information and resources on a variety of different disabilities, learn how to make the transition into the workforce easier, and find out what your legal rights on campus are.

https://www.affordablecolleges.com/resources/scholarships-students-with-disabilities/ - our financial experts at AffordableColleges.com have assembled a Financial Aid Guide which includes valuable resources for for Students with Disabilities.

https://www.vocationaltraininghq.com/best-vocational-training-programs-disabled/  - Best Vocational Training Programs for Disabled in 2018

 

General

http://www.makoa.org/index.htm - Disability information and resources.

http://www.QoLPublishing.com - Quality of Life Publishing. Specialists in gentle grief support offering books, booklets, and interactive workshops. Quality of Life Publishing also offers a speakers bureau featuring authors and experts in grief and bereavement.

http://www.sabaly.org - Site dedicated to Sabrina & Alyssa Barbiero. Tells their story and promotes awareness of NBIA. 

http://hhccommunications.com - Hospice and Healthcare Communications mission is to educate inform, motivate and inspire quality end of life and palliative care programming, policy and advocacy projects.

http://www.tircon.eu - TIRCON ("Treat Iron-Related Childhood-Onset Neurodegeneration") is a research consortium comprising 13 partners from 8 countries and funded by the EU under FP7. TIRCON's concept is to bring together the existing outstanding, but scattered expertise in NBIA research and care throughout Europe and on the international level.

http://www.abilities.ca - Abilities Canada and Abilities magazine.

https://www.redfin.com/blog/disaster-safety-for-people-with-disabilities - Disaster Safety for People with Disabilities: What to Do When Emergency Weather Strikes.

https://www.autism.org.uk/socialskills - Social isolation and social interaction.

http://afntoolkit.nusura.com/resources/individuals/emergency_checklist.pdf - Be Ready to Go: Disability-Specific Supplies for Emergency Kits.

https://www.redfin.com/blog/fire-safety-for-people-with-disabilities - Fire Safety for People with Disabilities: A How-To Guide for Prevention and Evacuation.

https://www.thesimpledollar.com/how-to-plan-provide-for-a-child-with-special-needs/ - The Simple Dollar’s guide on how to plan and provide for a child with special needs.

 

Government

http://www.ninds.nih.gov/news_and_events/proceedings/Hallervorden-Spatz.htm - The First Scientific Workshop of Hallervorden-Spatz Syndrome Conclusions/Recommendations/Participants

http://www.nlm.nih.gov/hinfo.html - National National Library of Medicine

http://www.nlm.nih.gov/medlineplus - Medline Plus, a popular health information site sponsored by the National Library of Medicine

http://www.ninds.nih.gov - Institute of Neurological Disorders and Stroke (NINDS), an alphabetical disorder index page, a listing of addresses and websites for national non-profit organizations, a listing of professional societies with an interest in neurology or related fields, links to disorder-specified clinical trials.

http://www.ncbi.nlm.nih.gov/pubmed - PubMed comprises more than 22 million citations for biomedical literature from MEDLINE, life science journals, and online books. Citations may include links to full-text content from PubMed Central and publisher web sites. to full-text content from PubMed Central and publisher books. Citations may include links to full-text content from PubMed Central and publisher

http://rarediseases.info.nih.gov  National Institutes of Health Office of Rare Diseases Research (ORDR). ORDR is part of the NationalCenter for Advancing Translational Sciences (NCATS). The goals of ORDR are to identify, stimulate, coordinate and support research to respond to the needs of patients who have any one of the approximately 6,800 rare diseases known today.

http://www.fda.gov - US Food and Drug Administration (FDA)

https://www.ssa.gov/disability/disability.html - How to Apply for Social Security Disability Benefits

 

Hobbies 

https://www.cerebralpalsy.org/information/activities - Being able to participate in the kinds of activities that a person wants to, when they want to, is something that can only happen if her or she has a chance to explore hobbies, activities and interests.

http://www.adaysworkmusiceducation.com - Designing and Building Musical Instruments and Adaptive Aids for persons who are physically challenged, developmentally disabled, manually impaired or wheelchair bound.

 

Mental and Emotional Well-being Resources

All these books are available on Amazon.com (https://smile.amazon.com/)

The Obstacle Is the Way - Ryan Holiday
References stoics and past historical heroes and their journeys during very difficult times.

Stillness is the Key - Ryan Holiday

The Little Book of Mindfulness – Patricia Collard
Small & compact – with short mindfulness exercises (5 to 10 mins) to add peace to your day.

On Grief and Grieving: Finding the Meaning of Grief Through the Five Stages of Loss - Elisabeth Kübler-Ross & David Kessler

The Six Stages of Grief – David Kessler
Continues from the 5 stages of Grief by researcher Kubler-Ross and adds a 6th stage for finding meaning in life after a loved one is lost.

Radical Self-Acceptance - Tara Brach
This particular book uses Eastern practices/beliefs from Buddhist’s teachings to heal internally – just a heads up. Still very good and you don’t have to be Buddhist to benefit from this book.

Self-Compassion - (Kristen Neff’s work)
FREE exercises & can sign up for her free self-compassion newsletter.

• Exercises / Guided Meditations
• Test how self-compassionate you are
• The author’s book on Self-Compassion

Self-Compassion Step by Step – Kristen Neff (Audio Book)
The proven power of being kind to yourself.

The Worry Trick – David A. Carbonell, PhD

The Anxious Thoughts Work Book – David A. Clark, PhD

The Untethered Soul: The Journey Beyond Yourself – Michael A. Singer

The Mindful Way through Anxiety – Susan M. Orsillo, PhD & Lizabeth Roemer, PhD

Mindful Anger: A Pathway to Emotional Freedom – Andrea Brandt, PhD

The Art of Calm: Relaxation Through the Five Senses – Brian Luke Seaward, PhD

1,001 Ways to Slow Down: The Little Book of Everyday Calm – Barbara Ann Kipfer

Unplug: A Simple Guide to Meditation for Busy Skeptics and Modern Soul Seekers – Suze Yalof Schwartz (Audio format Available)

Thin Slices of Anxiety: Observations and Advice to Ease a Worried Mind - Catherine Lepage

Do One Thing Everyday that Centers You: Mindfulness Journal - (A Robie Book)

The Peaceful Adult Coloring Book Series - (Adult Coloring Books)

• Be Inspired
  
• Keep Calm
  
• De-Stress
  
• Relax

 

Non-Profit Organizations

http://www.rarediseases.org - National Organization for Rare Disorders

http://www.geneticalliance.org - Genetic Alliance

http://www.irondisorders.org - Iron Disorders Institute

http://www.hoffnungsbaum.de  - Support organization for NBIA families in Germany

http://www.aisnaf.org  - Support organization for NBIA families in Italy

http://enachasociacion.blogspot.com/p/inicio.html  - Support organization for NBIA families in Spain

www.naadvocacy.org – advocates for Neuroacanthocytosis Patients

www.dystonia.org.uk – The Dystonia Society provides support, advocacy and information for anyone affected by the neurological movement condition known as dystonia

https://www.dystonia.org.uk/what-is-dystonia Dystonia is the term used to describe uncontrollable and sometimes painful muscle spasms caused by incorrect signals from the brain

 

Parenting

https://www.fatbraintoys.com/special_needs/ - At Fat Brain Toys, we're proud to offer these collections of toys for children with special needs

http://www.eparent.com - Exceptional Parent Magazine. This magazine focuses on parenting your child or young adult with a disability or special needs.

http://www.specialneeds.com - Special Needs Project has good books about disabilities, with links to resources.

http://www.kidsource.com/#sthash.IDyKTkLF.dpbs - Kidsource. Healthcare and education information which includes a bibliography to assist parents and professionals identify books that are written about or include characters that have a disability.

http://fathersnetwork.org/ - National Fathers Network for fathers of children with special needs

http://www.friendshipcircle.org/blog/2011/11/10/explaining-special-needs-to-your-child-15-great-children%E2%80%99s-books - Explaining special needs to your child: 15 great children’s books.

https://www.parentcenterhub.org/ - National Information Center for Children and Youth with Disabilities - funded by the Department of Education, a national information and referral center.

http://www.osteopathiccenter.org/ - Osteopathic Center for Children & Families

http://www.wrightslaw.com - Special Education law

http://www.familyvoices.org - A national grassroots network of families and friends speaking on behalf of children with special health care needs

http://www.ucando.org - Can do! Kids

http:www.SpecialEducationGuide.com - Information to help with the challenges that parents and teachers of children with special needs face such as establishing a parent-teacher partnership, collaborating on an IEP and more.

http://phdinspecialeducation.com/special-needs-parenting-handbook - A resources guide for parents of special needs children.

http://www.parentcenterhub.org/nichcy-resources - Center for Parent Information and Resources: new home for resources compiled by the National Information Center for Children and Youth with Disabilities (NICHCY) that lost their government funding as of September 30, 2013, so they no longer have a website. Many of the articles and fact sheets they produced can now be found here and are available in both English and Spanish.

http://www.mychildwithoutlimits.org/act/life-planning/managing - your-childs transition-to-adulthood/ Managing Your Child’s Transition to Adulthood

https://www.bigrentz.com/how-to-guides/home-modifications - young-adults-special-needs  Transition to Adulthood: Home Remodeling for young Adults with Special Needs         

https://www.yourstoragefinder.com/special-needs-checklist-how-disability-friendly-is-your-city  Special Needs Checklist: How Disability-Friendly is Your City?

http://www.healthyeating.net.nz/wp-content/uploads/2012/09/fact-sheet-advice-for-wheelchair-bound-people.pdf - Healthy Eating Advice for Wheelchair-bound People 

www.knowledgeinitiative.org/planner Helps assist caregivers and families with planning and recording their special needs child's daily schedule. Features allow users to record medication prescribed, meals, emergency contacts, games, and other daily routines. The planner can be printed and provided to caregivers and families once its filled out.  

http://www.wonderbaby.org/articles/sleep-schedule - Developing Your Blind Child’s Sleep Schedule.

https://www.freespirit.com/files/original/Survival-Guide-for-Kids-with-Physical-Disabilities-and-Challenges-preview-1.pdf - The Survival Guide for Kids with Physical Disabilities & Challenges

 

Pharmaceutical

http://www.needymeds.com/index.html - Listing of pharmaceutical manufacturers and the special programs they have to assist people who can't afford to buy the drugs they need

http://www.themedicineprogram.com/ - Program to provide free medicines to those in need

 

Recreation

http://www.ncpad.org - National Center on Physical Activity and Disability.

http://www.ncaonline.org - National Center on Accessibility

https://www.morganswonderland.com/  Morgan’s Wonderland San Antonio, TX

http://www.nscd.org - National Sports Center for the Disabled

http://www.diveheart.org - Diveheart provides scuba diving opportunities for children, adults and veterans with disabilities

http://www.adaptivesports.org - The Adaptive Sports Center enhances the quality of life of people with disabilities through exceptional outdoor adventure activities

http://www.accesstr.com - Site that has products for those with disabilities to help with adapting recreational activities

http://www.ainsleysangels.org - Ainsley's Angels are athletic ride-along programs created for children, teens, adults and veterans with disabilities who normally would not be able to experience endurance events such as triathlons or road races. It is a volunteer-based service that provides jogger chairs, bike trailers and rafts for anyone who is disabled (Known as Captains) and runners (Known as Angels) to push them in endurance events

http://phdinspecialeducation.com/groups-activities - A list of 101 sites dedicated to special needs activities such as camps, music, dance, sports, special needs vacations, and other useful information

https://adaptiveadventures.org/  Adaptive Adventures Mission: To provide progressive outdoor sports opportunities to improve quality of life for children, adults and veterans with physical disabilities and their families

https://www.helpguide.org/articles/healthy-living/chair-exercises-and-limited-mobility-fitness.htm - How to Exercise if You Have Limited Mobility 

 

Remodeling/Home Improvement

https://www.improvenet.com/r/costs-and-prices/disability-remodeling-cost - Disability Remodeling - What is the Average Cost to Renovate? 

https://www.improvenet.com/r/costs-and-prices/handicap-ramp-cost - Fortunately, installing a handicap ramp is not too expensive, but there are ways to lower your project cost even further

https://www.angieslist.com/articles/how-remodel-accessibility.htm - How to Remodel for Accessibility

https://www.homeadvisor.com/r/disability-friendly-backyard-for-kids - How to Create a Backyard Sanctuary for Kids with Disabilities 

https://www.homeadvisor.com/r/budget-friendly-smart-home-accommodations-for-seniors-and-individuals-with-special-needs/#.WZ-mvT4jGCg - Home Accommodations for Special Needs

https://www.redfin.com/blog/2016/04/the-ultimate-guide-to-home-accommodations-for-persons-with-disabilities.html - The Ultimate Guide to Home Accommodations for Persons with Disabilities

https://www.homeadvisor.com/r/grants-for-home-modification/ - Grants for Home Modification: 16 Resources for Homeowners with Disabilities

 

Travel

http://www.PatientTravel.org - National Patient Travel Helpline - this organization provides information about all forms of charitable, long-distance medical air transportation and provides referral to all appropriate sources of help available through the Angel Flight America Network

http://www.nps.gov - National Park Service

http://www.miusa.org/ncde/tipsheets/airlinetips - Air Travel Tips for People with Disabilities - Mobility International USA

http://www.independenttraveler.com/travel-tips/senior-travel/disabled-travel - Independent Traveler – Disabled Travel

http://www.capella.edu/interactivemedia/Commencement/docs/TravelingDisability.pdf - Traveling with a Disability or Medical Condition

http://www.tripbuzz.com/wheelchair-accessible-travel-guide - Wheelchair Accessible Travel Guide

http://www.insurancewith.com/travelling-with-a-medical-condition/ - The Essential Guide to Traveling with a Medical Condition

http://sath.org/disability-travel-websites - Society for Accessible Travel & Hospitality.  Disability travel websites worldwide

http://addisongroupnyc.com/venues/monarch/new-york-city-in-a-wheelchair/ - 7 reasons why wheelchair users should NOT avoid traveling to New York 

 

Wish Granting Organizations

www.goteamimpact.org - Team IMPACT improves the quality of life for children facing life-threatening illnesses by harnessing the power of teamwork by matching kids with college athletic teams.

www.akidagain.org - offers fun filled adventures, Parent’s Night Out, & Hospital visits for families in Ohio.

www.andreriveroflife.org - The Andres Sobel River of Life Foundation helps with urgent expenses to allow single parents to stay at the child’s bedside during catastrophic illness.

www.angelwish.org - Anglewish grants wishes to children with chronic illnesses.

www.awishwithwings.org - grants magical wishes for little Texans with life threatening conditions.

www.believeintomorrow.org - must be 17 years old or younger and receiving treatment at the Johns Hopkins Children’s Center. Provide programs to children nationwide.

www.b4k.org/wish.htm - Benefit 4 Kids’ Outdoor Wish program has been designed to allow children through the age of 17 with debilitating conditions or terminal illnesses an opportunity to experience the outdoors in a way they would not otherwise have the chance to do.

www.bertsbigadventure.org - provides a magical, all-expenses-paid, five-day journey to Walt Disney World for children between 5 and 12 years old with chronic and terminal illnesses and their families.

www.buckmasters.com/resources/badf/disabled-hunters.aspx - Life Hunts grants hunting trips to critically ill and extremely disabled children and young adults up to age 21. Adaptive Equipment Grants are awarded through local One Shot chapters.

www.campsunshine.org - Nestled alongside the shores of beautiful Sebago Lake in Maine, Camp Sunshine provides respite, support, joy and hope to children with life-threatening illnesses and their immediate families through various stages of a child’s illness. The year-round program is free of charge to all families, and includes 24-hour onsite medical and psychosocial support. Bereavement groups are also offered for families who have lost a child to an illness.

www.catchadream.org - provides once-in-a-lifetime hunting and fishing experiences for children under 18 years old who have a life-threatening illness.

www.childswish.com - United Special Sportsman Alliance, Inc. (USSA) is a 501(c) (3) non-profit national wish granting charity that specializes in sending critically ill and disabled youth and disabled veterans on the outdoor adventure of their dreams!

www.childrenswish.org - Grants wishes to children under the age of eighteen with life threatening illnesses.

www.dcmfwishes.org - Debbie Chisholm Memorial Foundation grants wishes to catastrophically ill children in Southern California.

www.deliverthedream.org - retreat programs for families experiencing serious illness or crisis.

www.dreamfactoryinc.org - grants dreams to children diagnosed with critical or chronic illnesses who are 3 through 18 years of age.

www.dreamfoundation.org - makes dreams come true for adults facing life threatening illness.

www.dreamscometrue.org - must live in the Lehigh, PA and be between the age of 4 and 17 years old.

www.gktw.org- Give Kids the World

www.goteamimpact.org - matching college athletic teams with children with life-threatening illness in Northeast, Mid Atlantic or Midwest.

www.grantedwish.org - grants wishes for the deserving, disabled, and disadvantaged all over the world.

www.hopekids.org - child age 0-18 with cancer or a life-threatening medical condition enjoys program of events centered around the greater metropolitan areas of Phoenix, Minneapolis/St.Paul, Salt Lake City and Dallas/Fort Worth.

www.huntofalifetime.org - isn’t your average Make-A-Wish foundation. They grant hunting & fishing dreams for children age 21 and under, who have been diagnosed with life threatening illnesses.

www.jasonsdreamsforkids.com- grants wishes for children in the New Jersey area only.

www.kidswishnetwork.org - grant wishes to kids between ages 3 and 18 who are battling life-threatening conditions. Wish kids can request just about anything for their wish, such as trips to theme parks, meeting celebrities, travel, and shopping sprees.

www.magicmoments.org - grants only non-medical wishes for 4-18 year old residents of Alabama.

www.martylyonsfoundation.org - Applications will be accepted for “special wishes” only for children chronologically aged three (3) through seventeen (17) years. Children must also reside, or be receiving medical treatment in Florida, New Jersey or New York.

www.newhopeforkids.org - grants wishes to children under the age of nineteen with life threatening illnesses

www.outdoordream.org - grants outdoor adventures to children who have been diagnosed with terminal or life-threatening illnesses.

www.rideawave.org - gives children with special needs the chance to feel the thrill of riding a wave and experience a safe, fun-filled day at the beach, whether they are physically, developmentally or economically challenged.

www.roomtodreamfoundation.org - mission is to create healing environments in hospitals, communities, and homes for children and adolescents who are facing chronic illnesses.

www.specialwish.org - grants the wish of a child or adolescent (birth through age 20) who has been diagnosed by a physician with a life-threatening disorder.

www.spwish.org - grants wishes of children under 21 with life threatening disorder

www.starlight.org - To be eligible for acceptance into the Great Escapes family activities program, a child must have a serious illness or a severe chronic medical condition that significantly affects their day-to-day existence.

www.sunshinefoundation.org - sole purpose is to answer the dreams of chronically ill, seriously ill, physically challenged and abused children, ages three to eighteen, whose families cannot fulfill their requests due to the financial strain that child's illness may cause.

www.tenderwishes.org/contact_us - must reside in the Regional Municipality of Niagara.

www.wishingwellusa.org - fulfills the fondest wish of any child not expected to reach age 18.

www.wishuponahero.com - largest social helping website. It allows people to help each other directly. Post a wish or be a hero.

www.wishuponastar.org - grants wishes of children afflicted with high risk and life threatening illnesses in California, ages 3 to 18 years old.

www.wish.org Make-A-Wish Foundation - grants wishes of children 2 ½ years and younger than 18 years old with a progressive, degenerative or malignant condition that places the child’s life in danger.

 

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