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Rare Disease Day Highlights Need for Fundraising for Treatment and Research

By: greenwichfreepress | March 11, 2023

Filed Under:

Health
Adult Refsum Disease
Alan Gunzburg
Allyson Buck
Andrew Marella
Dana Marella
Dana's Angels Research Trust
DART
Dr. Karen Santucci
Golden Lights Foundation
Gregg Pauletti
Phil Marella
Rare Disease Day
Vanishing White Matter Disease

More About
Health
Alan Gunzburg
Allyson Buck
Andrew Marella
Dana Marella
DART

Commemoration for National Gun Violence Awareness Day Set for June 5
Gun violence continues to be one of the leading causes of deaths of children and teens, and in Connecticut 151 people were killed in 2025.
May is National Mental Health Awareness Month; NAMI Southwest CT is Grateful for Local Support
YMCA of Greenwich Celebrates Record-Breaking Healthy Kids Day Attendance

View all Health Posts →

At Daffodil Society Annual Show: Yellow Blooms Bring the Light of Spring
This year the Daffodil Show's theme was "cycle on over” and guests were invited to bid on beautifully decorated bicycle baskets. Also, this year the Daffodil Society collaborated with Coffee for Good and the Maggie Daly Arts Cooperative. One piece from their exhibition was on display and interpreted by floral designers in the Artistic Division of Daffodil Show.
Old Greenwich School Breaks Ground on Phased, Occupied Renovation
Greenwich Lions Club Pancake Breakfast Draws Hundreds to GHS: "It's about Service"

View all Alan Gunzburg Posts →

Glenville School's "Best Day Ever" Knitted Hats Benefit VWM Families Foundation
The entire Glenville School community are knitting winter hats and key chains to benefit Vanishing White Matter (VWM) Families Foundation. Fourth grader Sam Buck has the rare disease.
PHOTOS: Crowds Flock to Opening of Kindness Rocks Garden at Greenwich Town Hall
PHOTOS: Teachers at Old Greenwich School Take Pies in the Face for a Great Cause

View all Allyson Buck Posts →

6th Annual DART to the Finish Charity Walk Set for September 30 at Greenwich Point
Family-Friendly Charity Walk Raises Funds for Rare Childhood Disease, Niemann-Pick Type C, Also Known as Childhood Alzheimer’s
Final Days to Register for Sept 25 "DART to the Finish" Charity 2-Mile Walk at Tod's Point
DART to the Finish Charity Walk Scheduled for September 25

View all Andrew Marella Posts →

6th Annual DART to the Finish Charity Walk Set for September 30 at Greenwich Point
Family-Friendly Charity Walk Raises Funds for Rare Childhood Disease, Niemann-Pick Type C, Also Known as Childhood Alzheimer’s
Final Days to Register for Sept 25 "DART to the Finish" Charity 2-Mile Walk at Tod's Point
DART to the Finish Charity Walk Scheduled for September 25

View all Dana Marella Posts →

Great Turnout for "DART to the Finish" Charity Walk at Tod's Point
Since its founding in 2002, after two of the Marella family’s four children, Dana (1993-2013) and Andrew, now age 26, were diagnosed, DART has raised $6.5M+ for research, launched SOAR-NPC, funded NIH scientists and supported trials, initiated newborn screening pilots and therapies now helping children like Andrew Marella, who continues to benefit from advancing treatment options.
Countdown to October 4 DART to the Finish Charity Walk
7th Annual DART to the Finish Raises $160,000+ for Crucial Niemann-Pick Type C Research

View all DART Posts →

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