We must continue looking at the sparkle in our journey.  I am not going to say our journey is always easy.  Laurel and our family have put plans on hold for hope.   Laurel especially has been strong and beautiful in her journey.   It is wonderful to watch her and maintain some normalcy while she transitions to health through the dedication of those who assist us and treat her.  Our family feels overwhelmed by the kindness of each person who has helped us in this journey!  I will say it is a blessed journey to see her health starting to be restored.  There have been times when we have faced forward in the right direction and are still looking for the brighter light.  When that brighter light slowly appears, we must know where it comes from.  Then go back to that light as a source of strength.  For me it often has been an answer to searching. 

 I feel fortunate to have attended the Health Care  Interprofessional Approach to the Management of Ectodermal Dysplasias, at UIC College of Dentistry.  This was my second time attending one of Dr. Stanford's educational presentations.  He knows the latest about treatments for Ectodermal Dysplasias.  Thanks Dr. Stanford!   In a conservation some time, I would love to tell you how a miracle happened that allow me to attend the conference.   I want to share this definition that I looked up and was the focus of the conference.  I have gone back to it a few times.  

“Interprofessionalism” is about two or more health professions working together to provide better patient care.  It’s a new vision for health professionals.  The Institute of Medicine says, “All health professionals should be educated to deliver patient-centered care as members of an interdisciplinary team, emphasizing evidence-based practice, quality improvement approaches, and informatics.”  Many healthcare professionals are excited about the possibilities created by collaborating more closely.  Patients will also benefit from interprofessionalism, which promises better coordinated and more effective care as well as potential reductions in costs and mistakes.

Teeth to finish a sparkling smile! 

gofundme.com/yf2yryck

Please use the above link for Laurel's story and donate towards her new permanent teeth. She is hoping to get them soon!! 

This quote from the book of Winnie the Pooh reminds me of how Laurel and I felt about the children, youth and adults affected by Ectodermal Dysplasias at the Colorado Conference!   We and they work very hard to get coverage from our Insurances!  Many times there is no coverage. Anyone is welcome to make a difference and donate to the Foundation or a child to help these children have teeth to chew, speak, and smile with!

We want to let you know about two upcoming events.  More information can be found using the link in our blog for the National Foundation.

Interprofessional Approach to the Management of Ectodermal Dysplasias  

National Foundation for Ectodermal Dysplasias

Friday, September 18, 2015 from 12:30 PM to 5:00 PM (CDT)  Chicago, IL

This is a free event!

http://nfed.org/index.php/news_events/page/healthcare-provider-conference-in-chicago-illinois

As the National Foundation states, "Because treatment of Ectodermal Dysplasias are often complex we understand not all team members are equally trained/experienced or ready to adequately treat these patients.  Dental professionals who are providing surgery including implants and restorative treatment should have been trained at programs accredited by a nationally recognized body or academic institution.   Oral manifestations of Ectodermal Dysplaisas are genetic and congenital medical conditions.  Thus the costs for evaluation and treatment of the oral manifestations of these disorders should be covered by medical insurance policies.  This does not include treating degeneration or diseases of the mouth."

Dr Todd Liston

  

  

      Dr Stephen Luddington - Orthodontics

We want everyone to know that Straumann Dental Implant's generous offer has made it to Utah!  Straumann has partnered with the National Ectodermal Dysplasia Foundation to lessen families' dental costs and improve access to care.  As you know most needed medical and dental procedures are not recognized as covered benefits by insurances.  The costs of necessary care is very high (thousands of dollars).   There is an application process for those diagnosed with ectodermal dysplasia.  Please see the National Foundation's link for more information or speak with a Straumann Representative.  

We can not thank Straumann enough!  

Because February is National Ectodermal Dysplasias month, we wanted to help bring positive awareness about ectodermal dysplasias.   Our goal was to deliver pamphlets from the National Foundation to every dental office in our city.   We would like to thank Bountiful Orthodontics (Dr. Feller and staff) for their support of our awareness efforts!  We also included giving pamphlets to

our local hospital new born floor, two orthodontists, two periodontists, two oral surgery offices and two pediatric offices.  At our request, the largest chapter of the Utah Dental Hygienists Association issued a social media post for February.  We updated our personal Facebook pages with the awareness banner.   Margaret hosted a preschool field trip to a dentist to increase awareness for early well child care.  Kids who are diagnosed are more likely to receive needed medical and dental care.  Finally she has a lead on a speaking opportunity at her alma mater school of Dental Hygiene in the state.  We are pleased with how the information has been welcomed!  There is a possibility of future fundraiser for ectodermal dysplasia kids and we looking for sponsors.  

Welcome!  We want you to know the National Foundation For Ectodermal Dysplasias has been a wonderful resource for us in understanding Ectodermal Dysplasias. They have helpful information if you are looking to identify a syndrome, to connect with other families affected by these dysplasias or for help in understanding how to work with medical insurance (see related links).  Through this blog we hope to assist the foundation by reaching out to the public in our area so effected children have a diagnosis, and so healthcare professionals have the knowledge they need to help people with ectodermal dysplasias.  We would love to hear your comments or questions! Thanks