Town of Greenwich Proclaims February 26, 2021 as ‘Rare Disease Awareness Day’

DART participated in the town of Greenwich’s second annual, and this year, “virtual” rare disease awareness day. “It was truly and honor for the second year to join other families in Greenwich who are fighting to make a real difference in the lives of those suffering from some of the more than 7,000 rare diseases.” commented Phil Marella, Trustee of DART.

Click here to read the article in the Greenwich Sentinel about this year’s virtual event.

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DART To The Finish Charity Walk for NPC 2021 – Saturday * Sept. 25, 2021 * 8:30a

Gather your friends and family and join us for an invigorating  2.0 mile walk around beautiful Tod’s Point in Old Greenwich, help us raise much needed funds to find a cure for Niemann-Pick type C disease.

No beach pass, no problem, DART has you covered.

All Greenwich and CT COVID-19 guidelines will be followed for a fun but safe walk, but if you’re still concerned, sign up as a VIRTUAL WALKER and you can still be an important part of the effort.  If we need to go all-virtual again we will.

For Walkers, check-in is at the 2nd Concession Stand at the beach at 8:30am.

*We’ve included a REWARDS program again this year to encourage adult and teen referrals AND benefit some of our local restaurants who have been long standing supporters of DART.  So please reach out to your family and friends, and encourage them to sign up and support us.

Urgent funds are still needed and the children are counting on us all to continue the amazing progress in NP-C research and treatment trials!

If you are going to Tods Point; a reminder that no dogs allowed at Tods Point by the Town of Greenwich at this time of year.

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Mallinckrodt pulls out of cyclodextrin trial – NPC community will continue to fight for it.

On January 20, 2021, Mallinckrodt Pharmaceuticals called Phil Marella of DART and other NPC community leaders and advised us that they were not going to go forward with an FDA new drug application for Adrabetadex/Cyclodextrin. Of course, this is devastating and frightening news for the Marella family and the more than 80 children in the US benefiting from the drug. Andrew Marella starting in the phase 1/2 clinical trial of the drug over 7 years ago and its benefit has been nothing short of miraculous.

Working with the Ara Parseghian Fund, the National Niemann-Pick Disease Foundation and other NPC family charities, DART will work tirelessly to keep this amazing therapy available to patients and hopefully find a new path to FDA approval.

Posted in Niemann-Pick Type C News, Research News Tagged with: ,