Listening Circle's International Membership Expands to Include Sweden
ALACHUA, FL -- (Marketwired) -- 06/24/16 -- CTD Holdings, Inc. (OTCQB: CTDH), a biotechnology company that develops cyclodextrin-based products for the treatment of disease, today announced that three families affected by Niemann-Pick Type C (NPC) disease joined CTD's Family and Physicians Listening Circle. Shannon Reedy of Cumberland, R.I., Alexander Kray of San Francisco, Calif., and Bill Owen of the U.K. joined as parent representatives. Dr. Martin Paucar Arce, MD, an internationally recognized neurologist at the Karolinska University Hospital, Stockholm, Sweden, whose scientific publications focus on movement disorders and lipid metabolism, joined in his capacity as a clinical physician.
Ms. Reedy has been involved in the NPC community since her son Chase was diagnosed at age 2 in 2010. She has advocated for the use of cyclodextrins on a compassionate basis in this disease, and has worked with several physicians to provide cyclodextrins to her son. Dr. Paucar Arce currently treats patients with NPC.
"Watching your child succumb to NPC is a very isolating experience. Right now there is no cure, there is no way to save my son from NPC and that is humbling. It is difficult to maintain relationships with people who aren't actually living this," said Ms. Reedy. "It is only by connecting and collaborating with other NPC families, along with researching everything there is to possibly know about all facets of this disease, that I've been able to maintain my sanity. I'm feeling very good about the group that is coming together for the Listening Circle. These families and sympathizers and yes, those with corporate interests, get the bigger picture approach to NPC. The conversations we are having here are inclusive and respectful of the myriad of options in our NPC pipeline right now. The work we can do here and the information we can and will share will hopefully bring other overwhelmed parents a modicum of peace. If you don't understand a problem, there is no way to begin to solve it. The Listening Circle is going to encourage a broader understanding of NPC."
The Listening Circle is a network for learning and sharing on topics of interest to its members, including updates on clinical trials, information sharing among parents on practical issues addressing management of the disease, and clinician insights on trends and challenges in the field.
"We are pleased to provide a platform for learning and sharing among treating physicians and families who grapple with NPC every day," said Dr. Sharon Hrynkow, CTD Senior Vice President for Medical Affairs and Listening Circle Co-Chair. "Listening Circle members help each other, and they teach us all along the way."
CTD Chairman and CEO N. Scott Fine added: "CTD is committed to our dialogue with families and health care providers. The input we have received so far has been invaluable in our preparations for clinical studies and we are confident that this level of support from those most affected by NPC will not only continue, but it will expand going forward."
NPC disease is a rare and fatal genetic disease. It impacts primarily children but is also increasingly diagnosed in older patients who may live with this disability for many years. NPC impacts the brain and major organs through abnormal accumulation of cholesterol in cells. CTD is working to obtain regulatory approval of its orphan drug designated Trappsol® Cyclo™ for the treatment of NPC.
About the Company:
CTD Holdings, Inc. is a biotechnology company that develops cyclodextrin-based products for the treatment of disease. The company's Trappsol® Cyclo™, an orphan drug designated product in the United States and Europe, is used to treat Niemann-Pick Type C, a rare and fatal genetic disease. Additional indications for the active ingredient in Trappsol® Cyclo™ are in development. For additional information, visit the company's website: www.ctd-holdings.com
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Source: CTD Holdings, Inc.