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GTBOHC


Greater Tampa Bay Oral Health Coalition

    Facebook
  @CavityThief

The Greater Tampa Bay Oral Health Coalition (GTBOHC) is a private, non-profit organization with the mission to improve the oral health of residents living in the Greater Tampa Bay Area by advocating and accounting for evidence based oral health practices, increased oral health literacy and by providing support for direct dental services.

Currently the GTBOHC lends practical direction on creating supportive environments, building healthy public policies, strengthening community action and re-orienting available oral health services. GTBOHC advocates for a new model of complementary actions, including the establishment of working partnerships with relevant agencies and sectors to focus on eliminating oral risk factors and their social determinants.


Our Challenge: A Crisis in Oral Health

Fifty years ago, most people faced their golden years without any teeth at all, whereas today, most of us keep our teeth for a lifetime. We’ve come a long way. But there’s still a lot of work to be done, especially in poor communities — particularly among children. The good news is that there are solutions. Easy solutions. Watch the video below to learn more about YOUR ROLE to prevent your child's tooth decay. New evidence shows it's not just about brushing and flossing.





Soft Bones

    Facebook.com/groups/softbones
  @SoftBonesHPP
  @softboneshpp

Soft Bones


The Soft Bones Foundation was formed in 2009 to provide information and a community to educate, empower and connect patients living with hypophosphatasia (HPP), their families and caregivers. The Foundation promotes research of this rare bone disease through awareness and fund-raising efforts.


What is HPP

HPP is a condition that affects healthy development of bones and teeth, making bones softer and more likely to fracture. People who have HPP have trouble making an enzyme called alkaline phosphatase, or ALP. Without this important ALP enzyme, certain chemicals build up and prevent calcium and phosphorus from binding together and depositing in the bones. As a result, bones can become soft, curved and fragile, and teeth may become loose or fall out prematurely. Learn more about HPP.


Public Policy & Advocacies

Soft Bones works on behalf of the HPP community to increase funding, awareness and necessary access for those with the disease. It is part of the Rare Bone Disease Advocacy Alliance allowing the group to lobby for increased federal spending to accelerate research, track prevalence and develop drug treatments and therapies. Soft Bones has conducted Congressional Briefings and hosted State House events in order to educate our leadership on HPP, rare diseases and the outstanding needs in our community, and has successfully worked with the Social Security Administration to allow those with HPP access to disability benefits. Soft Bones also works with other organizations with shared interests and has partnerships with multiple groups in the United States and across the world.


Research Grants

As an organization dedicated to promoting research of HPP, Soft Bones raises funds in order to provide grants to further innovative research by new and established investigators in HPP. Since its inception in 2008, Soft Bones has provided a total of $50,000 in research grants. Research grant recipients include:

  • Steven Mumm, Ph.D., Research Associate Professor of Medicine, Washington University School of Medicine and a member of the Scientific Staff at the Shriners Hospital for Children, St. Louis, Missouri. Mumm was awarded $25,000 to advance a genetic/outcome study of 144 multi-generation HPP families investigated at Shriners Hospital to help predict the clinical outcome for individuals with specific HPP mutations. The results could guide physicians concerning the prognosis and management of HPP over a patient’s lifetime. Mumm is a molecular geneticist who studies the DNA of individuals with rare genetic bone diseases, including HPP. He has investigated HPP for 15 years and his laboratory staff has performed TNSALP gene mutation analysis for more than 200 HPP patients and family members.
  • Luke Mortensen of Athens, Georgia was granted $25,000 in 2015 to use HPP mice to learn more about the therapeutic potential of transplanting alkaline phosphatase-rich cells into patients’ bone marrow space. Mortensen recently joined the Regenerative Bioscience Center (RBC) at The University of Georgia (UGA) where he works closely with the RBC Director, Steven Stice, who is actively working with lab teams on a surgical gel, dubbed “fracture putty” that can heal a broken bone within days. Mortensen is in the process of opening his own research lab within the RBC, and hopes the seed grant money will provide him the opportunity to gather preliminary data and develop the scientific justification for major external funding. Mortensen completed a postdoctoral fellowship at Harvard School of Dental Medicine and Massachusetts General Hospital before becoming an Assistant Professor of Regenerative Medicine and Engineering at UGA in 2014.

Grants are awarded as one-time seed grants for basic or clinical research directly related to HPP. Proposals are welcome from faculty members at a private research center or university. Applications from senior post-doctoral trainees or research associates are acceptable provided that the individual and his/her mentor have a track record of commitment to research relevant to HPP. This grant cannot be used for investigator salaries or indirect costs. The Soft Bones Scientific Advisory Board reviews all proposals and those interested should contact info@softbones.org to request an application.



American Behcet’s Disease Association (ABDA)

    American Behcet's Disease Association (ABDA)
  @ABDAbehcetsUSA



ABDAThe American Behcet’s Disease Association (ABDA) supports, educates and empowers the Behcet's community, while continuously advocating for better research, diagnostics, treatments and a cure. The organization was established in 1978 in Orange County, Calif., by Sheila Gregory, the mother of a young Behcet's patient.


What is Behcet’s Disease?

Behcet's disease, also known as Behcet's syndrome, is a rare chronic autoimmune, autoinflammatory disorder of unknown origin. Its manifestations are thought to be caused by vasculitis resulting in damage to blood vessels throughout the body. While Behcet's disease mainly occurs in young adults, typically in their 20's and 30's, individuals of all ages, genders and races may be affected, and symptoms vary from person to person. The most common symptoms include oral ulcers, genital ulcers, inflammation of the eye, skin lesions and arthritis.

Although Behcet's disease is recognized worldwide, prevalence is highest in countries in the eastern Mediterranean, the Middle East and East Asia. Current research suggests viral, bacterial, genetic and environmental factors may play a role in the development of Behcet's disease, but no specific cause has been established and no triggers have been identified. Epidemiological studies suggest there are approximately 16,000-20,000 cases of Behcet's disease in the United States (approximately one case out of every 170,000 individuals), but Behcet’s is considered rare because it affects less than 200,000 people. There is currently no cure and no FDA-approved treatment exists in the United States.


International Behcet’s Awareness Day

May 20 is International Behcet’s Awareness Day. Every year, the ABDA hosts a mini symposium and a Walk for Behcet’s during the week of Behcet’s Awareness Month. A patient hotline operated by trained patients (1-800-behcet) assists newly diagnosed patients, caregivers and health care professionals throughout the year.

The ABDA is a 501© nonprofit organization funded through generous donations. The organization is proud to participate in research and advocacy efforts.




Patient Story: Sandra McElgunn


"I have used many different biologics since getting diagnosed. It's a long, winding road of trial and error. I have tried to be a part of every research trial that is being studied, hoping that someday they find a cure.”

My name is Sandra McElgunn, I'm 65 years old and have had Behcet's disease since I was eight years old. When I was in third grade I was so sick for a whole year with high fevers, mouth ulcers, headaches, fatigue, joint pain and weakness. The doctors never could put a name to what was making me so ill. So they ended up calling it a mystery illness. I continued to have sickness throughout my teenage years and into my twenties.

When I was in my thirties I really felt something just wasn't right with my health and I started to search for answers. I once had a bladder infection with hundreds of unexplained ulcers inside my bladder for a whole year. My family doctor was puzzled, he ran many tests and sent me to several different specialists. I saw immunologists, dermatologists, endocrinologists, dentists and urologists. When I was in my early forties, I was referred to a highly recommended rheumatologist who was determined to get answers to what was making me so sick. After he did many tests and explored different avenues, he asked me if I have ever been told I may have Behcet's disease. He gave me some literature about this disease, and after reading about Behcet's, I instantly knew this is what I had. I was this rheumatologist’s first Behcet's patient, so he sent me to New York to see a Behcet's expert for a second opinion. When this doctor agreed with my rheumatologist, it was a relief to finally get a name of what was making me so chronically ill.

I have used many different biologics since getting diagnosed. It's a long, winding road of trial and error. I have tried to be a part of every research trial that is being studied, hoping that someday they find a cure. I volunteer for the American Behcet's Disease Association as their hotline operator and I have a passion for helping newly diagnosed Behcet’s patients and their caregivers. I like to try to stay positive, and active when this disease allows me to, but flares can disable me quickly. I stay courageous in my fight and never lose hope for that cure.


MY JOURNEY: “LIVING WITH BEHCET’S DISEASE”


I'm Mary Burke, 72 years young, I have volunteered with the Behcet’s Disease (BD) community for over 30 years.

I was adopted when I was six months told. I live in Blaine, Minnesota. At my last count, Minnesota has approximately 35 men, women and children diagnosed with BD. My husband and caregiver, Bob and I, have been married for 51 wonderful years. As you read about my journey with Behcet’s Disease, please remember…just because you aren’t exhibiting a specific symptom, now, it doesn’t mean you will never exhibit it. You never know what tomorrow may bring. Oftentimes, our symptoms appear sporadically. We can be feeling pretty good, and an hour later, be hit with a symptom flare. You can just hope and pray your family and friends are there for you if, or when, it happens!

Behcet’s Disease is a rare, chronic autoimmune, autoinflammatory disease whereby our immune system attacks and harms our own tissues, vessels and organs. It’s an extremely difficult disease to diagnose, because it’s made up of a collection of symptoms, which often do not occur at the same time. It’s extremely important to maintain records, pictures, etc.

I was diagnosed with Behcet’s Disease (BD) in 1983. My doctors and I soon realized I’d had many symptoms and flares since my childhood. As a child, adolescent, and young adult, I had many bouts of diarrhea, urinary and kidney infections, ear infections, headaches, and strep throat. So, I do know, and can sympathize and understand what my fellow Behceter’s (BDer’s) are going through, because I’m going through or have gone through it, too.

There are no tests, labs, etc., to confirm or deny a BD diagnosis; therefore, it can take years to get diagnosed correctly. There is no known cause, and no known cure, but one thing I’m sure of...it isn’t necessary in obtaining a proper diagnosis to be from or visited the countries along the Silk Route, as some doctors may tell you. Nor is it true BD will get better or disappear as you age.

Behcet’s Disease symptoms can and do vary from patient to patient. There may be flares and periods of remission. This is also true with the medications used to treat the symptoms. In other words, there is no one medication that helps all our symptoms. A medication that may work for one of us may not work for another…even when using the same medication to treat the same symptom(s). As a side note, there is no FDA approved treatment for Behcet’s Disease. My doctors and I are constantly fighting my insurance company to approve medications.

Some BD patients may be told by their doctors, “BD burns out as you age”. Again, every BD patient is affected differently by this disease…for some this is true, for others, including me, not so much…above all, hope is key when dealing with a chronic illness.

Prednisone is a commonly prescribed medication used to treat individual BD symptoms. Systemic flares/symptoms are treated much more aggressively, and many of us use a combination of medications to treat our systemic symptoms. The reactions I’ve gotten from many of the medications I’ve used were worse than symptoms themselves, as is the case with others as well. I’m fortunate to have a great group of doctors, and the support of family and friends.



CCD Smiles

  CCD Smiles
  CCD Family
  Parents with children with Cleidocranial Dysplasia



CCD Logo

CCD Smiles brings people together, supports research and helps with dental costs for those with cleidocranial dysplasia.


What is Cleidocranial Cysplasia (CCD)?

Cleidocranial dysplasia (CCD) is a skeletal disorder characterized by open fontanelles (soft spot), small or absent clavicles (collarbones) and multiple dental abnormalities. It is a genetic birth defect caused by mutations to the RUNX2 gene and it occurs one in every one million births. It can be passed from an affected parent or can be a random mutation. Manifestations may vary among individuals in the same family.

The founder of CCD Smiles, Kelly Wosnik, works closely with actor Gaten Matarazzo from “Stranger Things,” a Netflix original TV series, to raise awareness for CCD.



 

International Pemphigus and Pemphigoid Foundation (IPPF)

 

www.pemphigus.org/awareness
healourskin @healourskin

 

 
 

Patient Story: One Man’s Journey: Discovering, Battling, and Overcoming Pemphigus Vulgaris by Stu Zirin

 

It is my first-year anniversary of being diagnosed with Pemphigus Vulgaris. The severe and painful blistering in my mouth and throat have subsided. My journey into discovering what was wrong with me wasn’t as long as it is for most. My goal here is to help others take control over their health — especially when it is threatened by a disease that mystifies even the medical community. I didn’t know about the International Pemphigus and Pemphigoid Foundation (IPPF), so I was on my own when I was diagnosed, with no support from others who have suffered from this disease. I was able to self-diagnose through intense research and seek out the right type of treatment. Today, I’m in remission.



 


Sjögren’s Syndrome Foundation


www.sjogrens.org
SjogrensSyndromeFoundation @SjogrensOrg #ThisIsSjögrens Youtube


April is Sjögren’s Awareness Month and we hope you will join in educating the public about this complex disease and how it affects those who are living with it.


What is Sjögren's?


Sjögren's is a systemic autoimmune disease that affects the entire body. Along with symptoms of extensive dryness, other serious complications include profound fatigue, chronic pain, major organ involvement, neuropathies and lymphomas.

With upwards of 4,000,000 Americans suffering from Sjögren’s, it is one of the most prevalent autoimmune diseases. Nine out of 10 patients are women.

About half of the time Sjögren’s occurs alone and the other half it occurs in the presence of another autoimmune connective tissue disease such as rheumatoid arthritis, lupus or scleroderma.
Learn more about Sjögren’s.


SjogrensGraphic

14th International Sjogren’s Syndrome Symposium


The 14th International Sjogren’s Syndrome Symposium in Washington, DC, April 18-21, 2018. This symposium is designed to facilitate precision medicine practices in all aspects of clinical care, including patient diagnosis, prognosis, therapeutic responses, and prevention. This pioneering conference specifically seeks to bring together leaders from the Sjögren's syndrome/autoimmune research community to enhance translation of novel discoveries into clinical practice. Practitioners must embrace the advances and new technology to ensure their practice evolves with the field, ultimately improving patient care, quality and safety. Based on recent research, literature review, faculty perception, expert opinion and reviews from previous activity evaluation and outcome survey data, this two and one half day activity will bring together science, technology, evidence-based medicine and leaders in the field to provide updates to an international audience, narrowing the gaps in knowledge.

Contact Alan Baer at alanbaer@jhmi.edu with any questions about the symposium.



National Foundation for Ectodermal Dysplasias (NFED)

www.nfed.org
NationalFoundationforEctodermalDysplasias @NFED_ORG


I Will Never Have a Perfect Smile! by Alex Gaillard


I have ectodermal dysplasia, and for me, that meant that I would never have a perfect smile.
Since growing up, I’ve always known there was something off about my teeth. They didn’t grow in like my friends’. There were too many holes and not enough teeth growing in. My dentist noticed this in my smile, as well as my brother’s. I wouldn’t learn this until years later, but it was upon his recommendation that my parents would contact a geneticist and we would first hear about ectodermal dysplasia.





These photos were taken on Ectodermal Dysplasias Advocacy Day on Capitol Hill on July 19, 2017. The NFED took 175 people to Capitol Hill educate legislators about ectodermal dysplasias, the challenges their families face with this disorder and the need for a federal bill to mandate health insurance benefits for dental care of the condition.




Adenoid Cystic Carcinoma Research Foundation (ACCRF)

www.accrf.org
@accrf_org

Adenoid cystic carcinoma (ACC) is a rare cancer of secretory glands, typically originating in the head and neck region.

The Adenoid Cystic Carcinoma Research Foundation (ACCRF) supports research into adenoid cystic carcinoma that will accelerate the development of improved therapies and a cure for the disease



TMJ Association, Ltd

www.tmj.org
@tmjassociation

The TMJ Association, Ltd. (TMJA) is a nonprofit, patient advocacy organization whose mission is to improve the quality of health care and lives of everyone affected by Temporomandibular Disorders (TMD). Temporomandibular disorders comprise a collection of medical conditions affecting one or both jaw joints and/or their associated muscles and other tissues. Symptoms include pain and difficulties in making normal jaw movements, such as those used in speaking, chewing, swallowing or forming facial expressions.


 

OSTEOGENESIS IMPERFECTA FOUNDATION

 

www.oif.org
 Osteogenesis-Imperfecta-Foundation    @OIFoundation

The Osteogenesis Imperfecta Foundation is the only voluntary national organization dedicated to helping people manage the challenges associated with osteogenesis imperfecta (OI). The OI Foundation’s mission is to improve the quality of life for people affected by OI through research to find treatments and a cure, education, awareness and mutual support. 

Upcoming events: National Osteogenesis Imperfecta Awareness Week – May 4-11, 2019

What is Osteogenesis Imperfecta (OI)?
Osteogenesis imperfecta or Brittle Bone Disease is a complicated, variable and rare disorder. Its major feature is a fragile skeleton but many other body systems are also affected. OI is caused by a mutation in a gene that affects bone formation, bone strength and the structure of other tissues. 

This genetic disorder primarily caused by a faulty gene that reduces either the amount or the quality of type 1 collagen throughout the body. People with OI experience frequent broken bones from infancy through puberty. The frequency typically decreases in the young adult years but may increase again later in life. 

OI occurs equally among males and females and in all racial groups. It is estimated that approximately 25,000 to 50,000 people in the U.S. have OI. With good medical management and supportive care, the majority of people who have OI will lead healthy, productive lives and can expect an average life span. 

How is OI diagnosed? 
Broken bones that occur from little or no trauma are often the first indication that an infant or child may have OI. OI remains primarily a clinical diagnosis — a physician or geneticist can often diagnose the condition based on the presence of fractures and other clinical features. Additional blood and urine tests are often used to rule out other disorders such as Hypophosphatasia or rickets. 

How is OI Treated?
There is no cure for OI, but there are ways to manage the symptoms. The goal of all treatment is to minimize fractures, enhance independent function and promote general health. Medical care for children and adults who have OI involves an interdisciplinary team. This can include a primary care doctor, orthopedists, endocrinologists, geneticists, rehabilitation specialists, neurologists and pulmonologists. Treatment may include fracture care, physical therapy, surgical procedures, medications, life style features and mobility aides.

Osteogenesis Imperfecta Research
Supporting research is an important part of the OI Foundation’s mission. Often, the success of clinical studies of a rare disorder like OI depends on getting enough people to participate in the study so the results are meaningful. View the studies that are currently enrolling participants and the OI research grants available for medical researchers.

Dental Issues of Osteogenesis Imperfecta

Osteogenesis imperfecta (OI) is always associated with bone fragility. In addition, OI may affect the growth of the jaws and may or may not affect the teeth. About half of the people who have OI have teeth that appear normal, and their major concerns are routine care. However, the other half has a defect in the teeth called dentinogenesis imperfecta (DI), sometimes referred to as opalescent teeth or brittle teeth. These teeth may be misshapen, may chip or break easily, and will require special care. 

OIF Resources: OI Dental Issues Factsheet, Craniofacial and Dental Issues of OI Podcast Episode

  

Brittle Bone Disorders Consortium

The Brittle Bone Disorders Consortium is part of the National Institutes of Health Rare Diseases Clinical Research Network. It is a multi-center program that focuses on understanding and providing better treatment options for all types of osteogenesis imperfecta (OI). In addition, the consortium will sponsor a state of the art Contact Registry for People with OI and implement training programs for physicians and scientists.

What this Means to People with OI
This program will speed up the pace of research and put useful information into practice much quicker than otherwise possible by:

  • Using the skills of experienced researchers from many institutions
  • Creating access to research centers closer to where people live; making participation easier
  • Expanding educational opportunities for healthcare providers


 

HOPE: For Burning Mouth Syndrome

 

Burning Mouth Syndrome (BMS) is a painful, complex condition often described as a burning, scalding or tingling feeling in the mouth that may occur every day for months or longer. Dry mouth or an altered taste in the mouth may accompany the pain.

BMS is most commonly found in adults over the age of 60. It is estimated to be about five times more frequent in women than in men.

Doctors and dentists don’t have a specific test for BMS, which makes it hard to diagnose. No specific treatment works for everyone. However, a doctor can prescribe medications to help manage the pain, dry mouth or other symptoms.

HOPE: For Burning Mouth Syndrome is a support group on Facebook for people who suffer from the symptoms of Burning Mouth Syndrome. The group helps each other through encouragement and through the sharing of helpful information specific to coping with this condition and its many related consequences. The group welcomes anyone with related types of chronic mouth pain, as well as family and friends of mouth pain sufferers.

“I recently attended the 2018 NIH Pain Consortium Symposium on the ‘Intersection of Chronic Pain Management and the Opioid Crisis.’ So much is being done that I found myself full of hope. Knowing that the world is still full of brilliant, dedicated researchers really gave me a sense that one day, better treatments would be a reality.”
 
-Janice Lynch Schuster
AADR FNIDCR Patient Advocacy Council Member 

Frequently Asked Questions: 

Answers below obtained from the National Institutes of Health, National Center for Advancing Translational Science, Genetic and Rare Diseases Information Center website.