Project Alive president recognized with honors for work in rare disease research advocacy

NASHVILLE, TN – When her son Case was diagnosed with a rare disease called Hunter syndrome, Melissa Hogan turned her grief and sadness into hope and, more importantly, action.

She is now being recognized for her action and advocacy. Georgetown College named her and her husband, author and speaker Chris Hogan, each a 2018 Distinguished Alumni. She was also named a 2018 RARE Champion of Hope by the nonprofit Global Genes. She will accept the Champion of Hope Award October 3-4 at the Global Genes® 7th Annual Rare Patient Advocacy Summit.

Hogan was one of 100 nominees worldwide for the 2018 RARE Champion of Hope awards. Seven awards were given in several categories honoring the “notable efforts in rare disease advocacy, science, medical care and treatment, teen advocacy, collaborations in advocacy, and collaborations in science and technology.”

The RARE Champion of Hope honor recognizes Hogan’s advocacy efforts to not only raise funds for research and a cure, but also her efforts to raise awareness, her well informed collaboration with drug companies and doctors, and her tireless advocacy on behalf of the Project Alive families. Her actions are not just about advocacy, however, as they are moving the research forward for MPS II.

Hogan is also being recognized for her action and advocacy by the Clinical Trials Transformation Initiative (CTTI) and the U.S. Food and Drug Administration (FDA) as an appointee to its Patient Engagement Collaborative (PEC). This summer, Hogan was selected from nearly 200 nominees to serve on the Patient Engagement Collaborative (PEC), a group of patients, caregivers, and patient group representatives that will meet with FDA several times a year to discuss topics such as communication, transparency and the best ways for patients to participate in the FDA’s regulatory discussions about medical products

“We are excited to welcome these experts to the PEC and are confident that they will make a significant contribution to advancing patient engagement in research and development,” said Pamela Tenaerts, CTTI executive director. “This group will play a critical role in ensuring that every step of medical product development accounts for patients’ needs.”
The Georgetown College Distinguished Alumni award recognizes “individuals who have distinguished themselves professionally and through service to Georgetown College as well as their respective greater communities.”

A health care attorney by trade, Hogan dove into educating herself about Hunter Syndrome after her son’s diagnosis and became recognized as an expert on the disease clinically known as Mucopolysaccharidosis or MPS II. As she learned about the genetic disorder, which is caused by a missing or deficient enzyme that normally breaks down cellular waste in the body, she also educated herself about research to treat and even potentially cure her son’s disease.

Soon after her son’s diagnosis, she began to blog about what she was learning and everything her family was experiencing with her son’s condition. The blog connected her to a community of parents around the world whose children had Hunter Syndrome. In 2014, Hogan and several other parents formed the nonprofit Project Alive and she now serves as its President. Project Alive has now raised more than $2 million for research and the development of a gene therapy clinical trial for Hunter Syndrome, including a generous $250,000 grant from The Mark Cuban Foundation.

When she is not at home in Tennessee caring for Case and his two brothers, she is organizing Project Alive events and initiatives and traveling around the country to speak about Hunter Syndrome and parent advocacy. Just this spring she spoke at the World Drug Orphan Congress in Washington, D.C. and at the American Society of Gene and Cell Therapy’s 21st Annual Meeting in Chicago, IL. Earlier this month she presented “Managing the Complex Journey for MPS II” at the International Symposium on MPS & Related Diseases in San Diego, CA. She has also consulted on research designs for the disease around the world and serves as a Patient Representative for the U.S. Food and Drug Administration. Melissa is also working on books on pediatric medical trauma and advocating for a child with a chronic medical condition.

Earlier this summer, the Clinical Trials Transformation Initiative (CTTI) and the U.S. Food and Drug Administration (FDA) named Hogan as an appointee to their Patient Engagement Collaborative (PEC), a group of patients, caregivers, and patient group representatives that will meet with FDA several times a year to discuss topics such as communication, transparency and the best ways for patients to participate in the FDA’s regulatory discussions about medical products.

“We are excited to welcome these experts to the PEC and are confident that they will make a significant contribution to advancing patient engagement in research and development,” said Pamela Tenaerts, CTTI executive director. “This group will play a critical role in ensuring that every step of medical product development accounts for patients’ needs.”

Project Alive, the organization Hogan leads, is about $650,000 away from being able to fund a gene therapy clinical trial at Nationwide Children’s Hospital in Columbus, Ohio. Hogan has worked closely with researchers to get to this point. She was instrumental in negotiating the agreement with Nationwide Children’s Hospital (NCH) in Columbus, Ohio, for Project Alive to fund the production of gene vector for the Phase I/II clinical trial and has supported the hospital in its receipt of an investigational new drug (IND) approval for the clinical trial in late 2017.

“This is a critical step towards our goal to develop an effective gene therapy product to treat individuals with MPS II,” said Dr. Kim McBride, the clinical principal investigator of the project.

More about Project Alive at https://projectalive.org
More about the Georgetown College Distinguished Alumni at https://www.georgetowncollege.edu/news/homecoming-brunch-celebrate-honorees
More about the RARE Champion of Hope honorees at https://globalgenes.org/2018-rare-champions-of-hope-honorees/
More about the FDA panel at https://www.ctti-clinicaltrials.org/briefing-room/press-releases
For more information, please contact Barbara Esteves-Moore at 615-631-4383 or at bem@tworoadscommunications.com.