Larson Commends Good News for New Hartford Family
Hartford, CT – Today, Rep. John B. Larson (CT-01) announced that a one year-old New Hartford resident and his family were able to secure a supply of the medicine needed to treat his severe seizures. Christian Mumm suffers from a rare mutation of the KCNQ2 gene. As a result, Christian has severe seizures that restrict his physical and cognitive development and quality of life. Christian has found relief from seizures with the help of the drug Potiga, which is manufactured by GSK. In August 2016, GSK announced it would no longer be producing the drug due to a small user population. Larson learned about the issue the Mumm’s were having with securing a supply of Potiga for Christian and intervened. Larson’s office helped set up an ongoing dialogue between GSK, Christian’s care team and the Mumm family. An agreement was reached and the Mumm family was able secure a supply of Potiga for Christian.
“We are all on Team Christian,” said Larson. “I am glad that everybody was able to come together and rally around Christian to find a solution. This was about doing what was morally right to help this little boy. I would like to thank the entire team at GSK, especially Dr. Kate Knobil and James Cooper, Christian’s entire care team at Boston Children’s, especially Dr. Heather Olsen, Dr. Phillip Pearl, and RN Colleen Gagnon, the Hospital for Special Care in New Britian, and Christian’s local community, especially New Hartford Selectwoman Laura Garay and Bill & Anita Baxter for all coming together to find a solution for him. I’d like to commend Erica and Ed Mumm, and their entire family for leading this fight and inspiring us all.”
“The journey that ended in securing a supply of Potiga for Christian was one of courage, strength, and persistence for a little boy who could not advocate for himself. Congressman John Larson is clearly a peoples' Congressman. He did not hesitate in embracing Christian, our family, and the greater issue of the importance that orphan drugs have for rare disease and quality of life for those that suffer. We extend the utmost appreciation to Congressman Larson and his team, not only from our family but from families around the nation who may have previously experienced the same devastation that we faced when we were told that an essential drug was being discontinued. We firmly believe that the end result of this challenging experience has set an example of the importance for collaboration between pharmaceutical companies, families, and physicians as the value of a single story should never be discounted, for where there is one, there are many more,” said the Mumm Family.
In July 2017, the CT Delegation also wrote a letter to GSK asking them to continue working with the Mumm family for a positive outcome for Christian. The letter can be read here.