RARE from the Front Lines : The Good, The Bad And The Ugly

February 28th is Rare Disease Day.

rare disease.jpg

In Washington DC and all around the world events have been taking place as advocates, physicians, patients and policy makers meet to talk about Rare. Support groups are hosting events and people are sharing their stories in the hope of shining a spotlight on the many lesser-known diseases that are not always well understood, perhaps well funded or effectively treated.  Since an estimated 30 million Americans live with Rare Diseases, this is an important day.

There are so many families, like mine, who navigate the daily challenges, uncertainty, fears and frustrations that are part of living with a rare condition.  The goal of this global event to promote awareness, celebrate progress, and highlight the need for more resources is a wonderful thing. However, as a mother and a TCAPP volunteer who has had the privilege to meet so many families living life with rare, I can tell you that from the front lines, the situation is still not good.  I am saddened to report that mainstream medicine is still often failing rare– and sometimes in disturbing ways that seem to reflect a larger and more serious problem in our healthcare system.

For example, in the last 60 days our New England support group has witnessed:

  • A child dropped by her second PCP because she was told she was too complex. The physician explained that she was not able to get local specialists within her network willing to get involved in her case. (Even though it included a Children’s Hospital.) 
  • A child was informed she is no longer able to have her shoulder surgery done by her orthopedic because the hospital is no longer “taking” complex pediatric Ehlers Danlos Syndrome surgeries.
  • A child was discharged from a children’s hospital with a subluxed and possibly disclocated hip. Her mother asked repeatedly for an orthopedic consult but was not granted one as she has Ehlers Danlos Syndrome, is quite deconditioned and already in a wheelchair. She had been admitted for issues with her feeding tube, and the hospital chose to fulfill the minimum and acute reason for her admission. The mom reported the ride home from the hospital was pure hell as her daughter’s pain level was still quite high and she felt every bump in the road.
  • A family from Pennsylvania drove to Boston to see a neurologist for their child’s Complex Regional Pain Syndrome. On exam, the neurologist talked about the strong link between abuse and CRPS. No medical or therapeutic assistance was offered and the parents were very upset with the implied accusation. Being aware of the high incidence of CPS charges filed against families whose kids have rare conditions that are not recognized, this family left the hospital in fear.  

Is Medicine Losing Its Humanity?

It is estimated that over 30 million people in the US are living with rare diseases. Half of them are children.  The lack of financial incentives to treat these conditions is seeping into decisions on patient care and sometimes even impacting access to care. Is the Hippocratic oath becoming extinct?

 

I will not be ashamed to say "I know not," nor will I fail to call in my colleagues when the skills of another are needed for a patient's recovery.

 

Conversion, somatic and psychological diagnosis is all too often the go-to explanation when symptoms are not recognized or understood. Nobody knows this more than the rare community. The clinical consequences and emotional impact of these diagnosis can be damaging and create obstacles for patients in their journey for diagnosis and proper treatment.

 

I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person's family and economic stability. My responsibility includes these related problems, if I am to care adequately for the sick.

 

Physicians are often allowed a very limited time for each appointment. The time pressure on them can be intense. Yet rare and complex patients often require extra time to be adequately treated, and this is extra time is not covered by the insurance companies. So what’s a doc to do?  Imagine all the extra money insurance companies waste paying for unproductive visits and appointments that could be saved if we could help people obtain earlier diagnosis, and connect with experienced specialists earlier on.

 

I will remember that I remain a member of society, with special obligations to all my fellow human beings, those sound of mind and body as well as the infirm.

 

See what Rare is up against? As if having a rare condition is not enough. Many families share stories of disappointing appointments, declined diagnostic testing, the need to travel and expenses incurred. It can take years to get proper diagnosis and an experienced medical team in place.  The process itself can be draining, and in some cases, even traumatic.

How can we turn this around?  Did you know that many rare people feel that hospital ER’s are the worst place for them to go when they require acute care? How can we change that?

How do we restore the purpose of medicine in this country?

People need to matter more than bottom lines. No matter how complex or costly they may be.

Yet We Remain Grateful

The Ehlers Danlos, Mito, Dysautonomia and CRPS families in our support group are extremely grateful for the knowledgeable experts and physicians who DO understand rare conditions (and equally as important,) the co-morbidities associated with them.  These doctors work extra hours to support our kids, and often have to go above and beyond to help advocate for their young patients. We are also extremely grateful to the researchers who keep searching for answers in diagnostics and treatment, and pharmaceutical companies developing new therapies – especially for those whose metabolic issues may be different from the norm.  We are extremely grateful to the hospitals and institutions willing to allocate time and resources to treat people with rare conditions, and that support their physicians who work with the rare and complex community.  We are extremely grateful for organizations such as RSD Hope, RSDA, Mito Action, EDNF, Dysautonomia International, National Dysautonomia Research Foundation, The Chiari InstituteRare Disease United, local support groups,  and so many others that help rare families to connect with physicians and resources needed.

And last but certainly not least, we are extremely grateful for efforts like Rare Disease Week. Information improves understanding.  Educating and promoting better awareness within the medical community and healthcare system is the only way to acheive better and more compassionate care for our kids.

They deserve it – all people do.

For more information: http://globalgenes.org/rare-diseases-facts-statistics/

Suggested medical work-up for those traveling to see Ehlers Danlos specialists

The following document was agreed upon by physicians who attended the 2014 TCAPP Physician Think Tank on Ehlers Danlos Syndrome (EDS) and Co-Morbid Conditions. This worksheet is only a guide for patients (and their local physicians) who are traveling to see an EDS specialist. This guide is not meant to take the place of, or to override the recommendations of one’s primary care physician. The goals of this guide are to help traveling patients keep as much of their medical care and work-up with their local physicians; aide the patients in lessening their financial costs by doing as much of their medical work-up at home as they are able; and when travel is necessary, help the patient collect as much medical information in advance to make the most out of a consult
with the EDS specialist.

Download Suggested Medical Work-up

It’s That Time of Year Again: The Polar Bear Plunge in Honor of TCAPP!

Like the last 3 years, Dr. Pradeep Chopra will lead the plunge for TCAPP in Newport, RI and we’ll be there to videotape Dr. Chopra and one of our TCAPP kids, Karen Richards, do the polar bear plunge in honor of TCAPP and all those that suffer from chronic pain conditions.

The Polar Bear Plunge is just a small insight into the lives of those living with chronic pain. It imitates sensations that hit your body in those with chronic pain:  the ache, the coldness, and the numbness, as you enter the freezing waters and submerge followed by the tingling, prickling burning sensation that overtakes your body as your circulation returns.  However, these are constant pain signs that our kids, teens and adults live with on a daily basis and their pain is much more magnified and, it never leaves them.

To support Dr. Chopra and Karen Richards do the Polar Bear Plunge in honor of all those with chronic pain conditions, you can do one of the following things:
Go to this link and make a donation in Honor of Dr. Chopra and Karen Richards doing the Plunge:

http://www.tcapp.org/donate-tcapp/

Do a plunge yourself in honor of TCAPP and get others to sponsor you. If you do this, please make sure to video your Polar Plunge and send it to info@tcapp.org for our Facebook Page and TCAPP Website.

TCAPP Plans for 2015

Although we are small, TCAPP has some great plans for 2015 and we are working hard to get funding and grants to accomplish the following :

  • Although the camp is free, we at TCAPP realize that many would love to go to camp but may still have trouble making it there. Therefore, we are working hard on getting sponsors and donations to “fund a family” where a travel stipend for an accepted camper may be offered based on financial need.
  • TCAPP is working on getting funding or grant money for a private based message board system to connect all our wonderful specialists that deal with chronic pain. This message board system would allow EDS specialists to consult with RSD specialists and Mast Cell Specialists and Neurosurgeons, etc. The goal would be to connect some of these fabulous physicians out there that deal with complex chronic pain conditions (all sorts) and get them speaking to each other and sharing information in a secure, private environment. We as families know that with all these great minds sharing information, progress will be made.
  • We are still interested and hoping to start a campaign to further fund a documentary or presentation on the life of the complex chronic pain family and the dangers encountered in today’s world: The dangers of misdiagnosis, the dangers of not being treated because one is too complex, and, the dangers of misdiagnosis or pushing for answers leading to false allegations of Medical Child Abuse.
  • Finally, we hope to be able to once again hold our 3rd annual Think Tank in 2015.

It is important to remember that TCAPP can only accomplish all these great things with help. TCAPP is small and run by volunteers with big hearts. Our operation costs are 0.4% of our entire yearly budget and the rest goes to these projects and information provided to all of you. We always welcome monetary donations (and you may specify what you would like your donation to go to), but, we also welcome volunteers to help with all aspects of our operations. If you’re interested in volunteering, please email Pam at pam@tcapp.org and she will put you to work.

Have a Happy Holiday and Happy New Year!
Sue, Aurora & Pam

 

 

Here At Last: Family Summer Camp for Pediatric Pain Patients -- Free of Charge!!!

We Finally Did It!

The Coalition Against Pediatric Pain (TCAPP), RSDSA, and the US Pain Foundation have partnered with The Center for Courageous Kids in Kentucky and have pooled all of our resources to create a camp for kids in pain. This will be a family camp that will take place at The Center for Courageous Kids in Scottsville, Kentucky from July 14-17th and is free of charge. It will be a time for families and kids that deal with daily pain to kick up their heels and have fun in a safe, accepting environment!

To learn more about the camp location and what they have to offer, please visit The Center for Courageous Kids website at: http://www.thecenterforcourageouskids.org.

To apply for the pediatric pain family camp, please follow the following steps:

Step One: Complete the Application On-Line By Clicking Here:
Pediatric Pain On-Line Camp Application

Step Two:  Print Out the Application, Sign It, Have your Physician Sign It and mail it in to The Center for Courageous Kids.

Other Option: To print out the application and fill it out by hand, click here: 
Printed Out PDF On-Line Camp Application

All applications will be processed by The Center for Courageous Kids and campers/families will be accepted based on time of application, lodging requirements, and room availability. 

TCAPP, RSDSA, and The US Pain Foundation realize that finances are tight for most families dealing with pediatric pain and transportation to the camp may be difficult. We are all working together to fundraise and provide traveling stipends for those who need them. More will come regarding this in the future. In the meantime, we hope you will use the advance notice to plan accordingly, create personal fundraisers for travel to camp (once again the camp is free), and/or maybe include some travel gift cards on your upcoming holiday wish list.

We anticipate that this will be a great experience and an exciting time for everyone!! Let's have some fun!!!  Hope to see you all there!!!

A huge thank you to The Center for Courageous Kids, RSDSA and the US Pain Foundation for helping make TCAPP's dream come true and be able to offer a camp for kids in chronic pain.

Sincerely,
RSDSA, TCAPP, & The US Pain Foundation

2014 Think Tank Video Introduction

TCAPP is pleased to be able to share with you videos of our 2014 Think Tank that took place last month in Washington DC.  We are hopeful that the information presented by these doctors, many a part of the TCAPP Medical Advisory Board, will bring new insights into medical conditions our TCAPP community is struggling with.  If we are able to help just one child, we have succeeded.

We will be announcing videos regularly on our facebook page and website.  Our first video is a reminder and thank you to our doctors of how important they are to our kids.


TCAPP and Genelex: Partners in battling pediatric pain

TCAPP is proud to partner with Genelex in the important battle against pediatric pain.  If your child uses medication to help with pediatric pain, we encourage you to evaluate their personalized prescribing system at http://genelex.com/patients.

The Genelex Blog, PGx in Practice
September 11, 2014


It’s tragic when a young life is haunted by the specter of a disease that causes chronic pain. Such afflictions affect child and family both, making the availability of caregiver resources all the more vital.

Since 2011, The Coalition Against Pediatric Pain (TCAPP) has been supporting families of children affected by chronic pain from rare diseases and has brought many together to share information and resources. The national nonprofit also raises money to fund research focused on pediatric pain conditions and brings together esteemed medical experts from across the country to share ideas. Advocating for children affected by chronic-pain-causing diseases and educating the public at large about the long-term consequences of pediatric pain are also key goals of TCAPP.

The nonprofit was founded by families of children living with chronic neuropathic pain diseases, such as Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome (RSD/CRPS), Ehlers Danlos Syndrome, muscle spasms, migraines, abdominal migraines and painful gastrointestinal conditions. All of the founding members’ children have RSD/CRPS, in which high levels of nerve impulses are sent to an affected site on the body, and many suffer from multiple conditions.

TCAPP began working with Genelex in 2012, says Aurora Richards-Stipnieks, DVM, treasurer and board member of the nonprofit. The relationship began after Barbara Granoff, a founding board member of the nonprofit, used the DNA drug sensitivity testing Genelex provides to better map a drug regimen for her daughter, Shira, who is living with multiple chronic pain-causing diseases.

More information about Shira’s genetic makeup allowed her physicians to help ensure that medications she took did not accumulate in her body, possibly leading to adverse drug reactions, and helped them choose pain medications that work more effectively. This led to Shira having more trust in her medication routine, and ultimately, improved medication outcomes. Learn more about Shira’s story here.

Since then, Genelex has helped TCAPP raise almost $2,000 in donations for TCAPP through demonstrations of the YouScript Personal Prescribing System at two major medical specialty conferences, Richards-Stipnieks says. This is in addition to other Genelex contributions, such as working with TCAPP on their annual Think Tank events. These bring pediatric and adult medical experts together to share information and brainstorm ways to offer better treatment to children suffering from chronic pain.

Power Up for Mito

During the third week of September (the 14th through the 20th), the Mito community comes together to raise awareness for Mitochondrial Disease Awareness Week.

Visit Mito Action's website at http://www.mitoaction.org/awareness for ways you can be a part.

Why is Awareness Week important?

Thousands of families face the reality of living with mitochondrial disease. During the third week of September, MitoAction and families across the country bring awareness to Mito. Each year we provide support, educate the public, and advocate for families. Each year, we grow stronger.

We believe that awareness is important year round, but highlighting these issues during Mitochondrial Disease Awareness Week provides a time for people to come together and display the passion and strength of those working to improve the lives of those affected by Mito.
— Mito Action

 

 

TCAPP Physician Conference Opens Up to Patients

Registration is Closed

TCAPP is excited to announce that we are able to open up our 1 day conference,  Pain in Pediatric with Complex Chronic Diseases, to patients and their families.  

Join us September 13th in Washington DC at the Key Bridge Marriot to hear Dr. Francomano, Dr. Henderson, Dr. Teasely, Dr. Rowe, Dr, Niksch, and Dr. Bunchman address:

  • Peripheral Neuropathic Pain

  • POTS and Fatigue: Diagnosing and Management

  • Neurosurgical Options for Pediatric Complex Pain Conditions Involving Ehlers Danlos Sydrome

  • Complex Pain? Could a Connective Tissue Disease be Involved?:  Basic Exam Findings Seen

  • Fatigue, Pain, and Hypermobility in the Pediatric Population

  • Nephrology Issues with Connective Tissue Disorders  and Mitochondrial Disorder

This conference will present an integrated approach to the assessment and management 
of pain in pediatric patients and highlight medical conditions often associated with 
chronic pain such as Ehlers Danlos Syndrome (EDS), RSD/CRPS, Dysautonomia, Chronic 
Fatigue, Chiari, Cervical Instability, Occult Tethered Cord, Mitochondrial Disorders and 
more.  

You won't want to miss hearing from these amazing doctors on the chronic pain disorders that effect both adults and children.  We look forward to seeing you there.


Grants available to help pay for children's health care costs

Johnson City Press
August 12th, 2014 1:17 pm by STAFF REPORTS

NASHVILLE — The UnitedHealthcare Children’s Foundation is seeking grant applications from families in need of financial assistance to help pay for their child’s health care treatments, services or equipment not covered or not fully covered by a commercial health insurance plan.

Qualifying families can receive up to $5,000 per grant with a lifetime maximum of $10,000 per child to help pay for medical services and equipment such as physical, occupational and speech therapy, counseling services, surgeries, prescriptions, wheelchairs, orthotics, eyeglasses and hearing aids.

To be eligible for a grant, children must be 16 years of age or younger. Families must meet economic guidelines, reside in the United States and have a commercial health insurance plan. Grants are available for medical expenses families have incurred 60 days prior to the date of application as well as for ongoing and future medical needs.

Parents or legal guardians may apply for grants at www.UHCCF.org. There is no application deadline.

In 2013, UHCCF awarded more than 1,700 medical grants worth $5.6 million to children and their families across the United States for treatments associated with medical conditions such as cancer, spina bifida, muscular dystrophy, diabetes, hearing loss, autism, cystic fibrosis, Down syndrome, ADHD and cerebral palsy. Last year, UHCCF awarded 70 grants totaling nearly $200,000 to families in Tennessee.

Gregory D. Reidy, CEO of UnitedHealthcare’s Mid-South Health Plan, said, “Thousands of children struggle every day for something many of us take for granted, our health. That reality is the driving force behind UnitedHealthcare Children’s Foundation’s mission to help families in need access medical care that will improve their child’s health. Our medical grants have already helped thousands of children in need, and we are looking to help thousands’ more children in the future.”

To help raise funds for its child medical grant program, UHCCF has published a new children’s book, “Oliver & Hope’s Adventure Under the Stars.” The second book in the Oliver & Hope series, the book follows last year’s award-winning book, “Oliver & Hope’s Amusing Adventure.”

Both books are available on Amazon.com for $13.95 each. The first 250 people who purchase an “Oliver & Hope’s Adventure Under the Stars” book will receive a Chewie the English bulldog plush toy.

Organizations and private donors may make tax-deductible donations to UHCCF at www.UHCCF.org. Donations are used for grants to help children and families in the region in which they are received.

For more information on UHCCF, visit www.UHCCF.org.

Tell your doctors about this conference: Pain in Pediatrics with Complex Chronic Disease

Would you like your doctors to understand more about your child's complex chronic disease? Invite them to Pain in Pediatrics with Complex Chronic Disease.  This one day class with CME's will be taught by:

  • Timothy Bunchman, MD

Professor & Chief of Nephrology and UroRenal Clinic, Virginia Commonwealth University Children’s Hospital of Richmond.

  • Clair A. Francomano, MD

Associate Professor of Medicine,Johns Hopkins University School of Medicine Director, 
Adult Genetics,Harvey Institute for Human Genetics,Greater Baltimore Medical Center.

  • Fraser C. Henderson, Sr. MD

Chiari & Syringomyelia Foundation, Inc., Chief of Neurosurgery, Doctors Community Hospital.

  • Alisa Niksch, MD 

Director of Pediatric Electrophysiology and a Pediatric Cardiologist at Tufts Floating Hospital 
for Children.

  • Peter Rowe, MD

Director of the Children’s Center Chronic Fatigue, Professor of Pediatrics, John Hopkins 
Hospital.

  • Jean E. Teasley, MD

Associate Professor of Neurology & Pediatrics, Medical Director, Pediatric Palliative Care, 
Virginia Commonwealth University Children’s Hospital of Richmond.

This conference will present an integrated approach to the assessment and management 
of pain in pediatric patients and highlight medical conditions often associated with 
chronic pain such as Ehlers Danlos Syndrome (EDS), RSD/CRPS, Dysautonomia, Chronic 
Fatigue, Chiari, Cervical Instability, Occult Tethered Cord, Mitochondrial Disorders and 
more. It is meant to educate all medical professionals that may come across a child or 
young adult in chronic pain and help them understand how pain can sometimes be a 
sign of a complex chronic illness that the child or young adult may be suffering from.


Would you like to Guest Blog?

We hope you enjoy our blog, Parents Talk! Since there is no manual for how to parent a child in chronic pain, or how to navigate the sometimes seemingly endless abyss of physical and emotional challenges, we have created this space to explore and discuss the unique parenting and family issues that so many of us face. We are not experts, just parents like you, who hope that by sharing experiences and discussing strategies we might spark ideas and provide insights on new ways to help our kids.

We invite you to submit ideas for topics or parenting challenges that you would like to explore. We also welcome guest bloggers, so if you have an area of expertise, or topic that you would like to write about, please feel free to contact us at PARENTSTALK@TCAPP.ORG.

Make a Child's Dream a Reality

Kids living in pain are robbed of so many childhood experiences - including going to an overnight camp.  TCAPP is partnering with Camp for Courageous Kids to send kids to a week long camp where our kids can step out of the shadows of their every day lives and step into the spotlight with other children coping with the same challenges.  

Help TCAPP make a child's dream a reality with Shop for a Cause

On Saturday, August 23, 2014, Macy's across the country will be hosting SHOP FOR A CAUSE.

Non-profit organizations will be fundraising through this fabulous opportunity provided to us from Macy's. All you have to do is purchase a $5 coupon from TCAPP and then have fun by shopping at Macy's on August 23, 2014. The coupon allows you to save 25% on regular, sale & clearance items, including home-even save on most brands usually excluded*  Also, save 10% on electrics/electronics, watches, furniture, mattresses, and rugs/floor coverings.

*Exclusions apply and are listed on the back of each coupon.

Every person who purchases a coupon will also have a chance to win a $500 Gift Card to Macy's.

If you would like to help TCAPP sell coupons please contact Sue Pinkham at sue@tcapp.org. Sue will send you as many coupons as you can sell :) 

 

Buy a coupon now!

 
Shop for a Cause
5.00

Purchase our savings pass and print it out. On August 23rd, save 25% all day at Macy's stores by using our savings pass. 

Add to Cart
 


Walk and Bake Sale to Benefit TCAPP

Rosemary Wiser, one of our first TCAPP Kids, is hosting a walk and bake sale to raise awareness for RSD/CRPS.   For those that don't know, RSD/CRPS is a condition of the nervous system that causes serve nerve pain among other things. Rosemary has been living with it for years now and not enough people know about it. She is hoping to change that. 

The walk and bake sale are going to be on July 26 in Bridgton ME.  They will gather at 10:30 for an 11:00 am walk on the lawn of the Bridgton Community Center. The walk will make a loop through downtown Bridgton. 

In addition to the walk we will be having a bake sale from 10 am on in front of the Oberg Agency building on Main St. 

We need to order t-shirts soon, so if you would like one please sign up on the registration link- even if you cannot be there the day of. 

Registration: https://docs.google.com/forms/d/1zHsGUkUQFW6-VtkQPfAH6Optp3-_eYWRdwOA-FfKaN8/viewform?usp=send_form

The money raised from this event will go to two organizations who do amazing things for people living with RSD/CRPS: the RSDSA (http://www.rsds.org/index2.html) and The Coalition Against Pediatric Pain ( http://www.tcapp.org/) . 

Event Facebook page: https://www.facebook.com/events/705272359515207/709699415739168/?notif_t=like

Online donations: http://www.firstgiving.com/fundraiser/rosemary-wiser/rosemarywisersfundraisingpage

Zebra in a Party Hat (jewelry and art for zebras and spoonies)

Selkie

Selkie

Hello and welcome to our store! We are Robin and Selkie, a mother and daughter artistic team, and we make jewelry, art, and crafts for zebras and spoonies. We are both affected by multiple rare disorders that cause chronic pain. When we aren't homeschooling, we are working on art projects, crafts and making jewelry. So we thought, "Why not make a store to sell the things we make and donate the proceeds to our favorite charity, The Coalition Against Pediatric Pain (TCAPP)?"

TCAPP has been an invaluable resource for us and so many others with children suffering from pain conditions. Robin also volunteers for TCAPP as part of their Outreach program for Southern California. 

Visit our store at https://www.etsy.com/shop/ZebraInAPartyHat?page=2, and help TCAPP when you make a purchase.  We are happy to make custom orders! If you have a special request, please message us and we will do our best to accomodate your needs. 

Also, "like" us on Facebook at https://www.facebook.com/ZebraInAPartyHat for the latest promotions!

Who are zebras and spoonies, you ask?

"Zebra" is a slang term for a rare medical diagnosis. So, "zebras" refers to the people who have these conditions.

To read all about The Spoon Theory written by Christine Miserandino, go here: http://www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

Conversion Disorder Commentary, Dr. Barnum

As part of making an educational video, Dr. Barnum (a member of TCAPP's MAB and a practicing child and adolescent psychiatrist who works with a number of children and teens with persistent complex medical problems) interviewed a half a dozen children and parents while attending TCAPP's Think Tank.  This article stems from those interviews, and offers commentary and opinion based on the experiences that these patients reported.

We've launched our new website

Check out TCAPP's new website!  Our new design makes it easier to find information and several new TCAPP programs have been launched to better connect the community we support.

Our State Outreach Program is supported by individuals who have become a part of the TCAPP team as a point of contact for each state.  These individuals are available to talk to and provide support, and will be putting together local events to bring our families dealing with pediatric pain together.

Also check out our Send a Smile program, a new TCAPP initiative so that we can "Send a Smile" to someone who needs it.  And, the website features several message boards:  TCAPP Kids is a forum for our kids to support one another and TCAPP Cares is a place where we can post information about our kids who are going through surgeries and/or hospital stays.

We hope you like the new website format and programs, and we invite you to get involved with TCAPP.   Alone we are rare, together we are stronger - please consider volunteering or donating to help TCAPP support our families.