Patient 
  Advocacy 
  Council

The Friends of NIDCR Patient Advocacy Council is comprised of non-profit organizations who work together to 1) support oral health research and NIDCR and 2) transfer oral health research from bench to bedside. 

At the end of the day, research is conducted to improve the health and lives of others. Below are quotes, stories, photos and videos that demonstrate the impact the Patient Advocacy Council has on the lives of many.

The FNIDCR PAC is co-chaired by Kathy Hammitt and Mary Fete.

View all the current members of the Patient Advocacy Council.

View all past Patient Advocacy Council Spotlight profiles.

  

 

SOFT BONES

https://www.softbones.org/
@SoftBonesHPP
  Hypophosphatasia: The Soft Bones Foundation
 @softboneshpp
 

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. For more information, continue reading What Is 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. 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. It is part of the Rare Bone Alliance allowing the group to lobby for increased federal spending to accelerate research, track prevalence and develop drug treatments and therapies.

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 2009, Soft Bones has provided a total of $270,000 in research grants.

Past research grant recipients include:

  • Steven Mumm, Washington University School of Medicine, St. Louis, Mo.
  • Luke Mortensen, University of Georgia, Athens
  • Brian Foster, The Ohio State University, Columbus
  • Kathryn Dahir, Vanderbilt University Medical Center, Nashville, Tenn.
  • Marc McKee, McGill University, Montreal, Canada

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 should 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.