CHARITY RACE FOR 4-YEAR-OLD WITH RARE DISEASE
Hundreds of Upper West Siders came out last Sunday to support 4-year-old Rafaella “Rafi” Lily Kopelan, running a 5K in her honor through Riverside Park. Kopelan was diagnosed with a rare genetic connective tissue disorder called epidermolysis bullosa (EB), a disease that makes it difficult for skin to produce collagen, leading to skin separation, painful blisters and open wounds.
Young people with the disease are known as butterfly children because their skin is so fragile, much like the wings of a butterfly. Kopelan is only the eighth child in the world to undergo a clinical trial stem cell transplant to treat her EB, which has allowed her body to produce the necessary protein she was unable to produce before the procedure.
At Sunday’s event, State Assembly Member Linda Rosenthal presented Kopelan with a resolution proclaiming March 11 Butterfly Children Awareness Day.
“I decided to sponsor this resolution after learning about Rafi’s courage and the strength of her parents, Jackie and Brett, who have become incredible advocates on a crusade for a cure,” Rosenthal said.
“We are so happy and proud to live among such a supportive group of people,” said Jackie Kopelan, her mother. “Rafi’s Run would never have been so successful had it not been for places like Montclare Children’s School [which Kopelan attends], the first place that made her feel like everyone else. It is our hope that events like Rafi’s Run will raise enough awareness to eventually end epidermolysis bullosa, the worst disease you never heard of.”
LOCAL STATE SENATOR EYEING CONGRESS
State Sen. Adriano Espaillat, who represents portions of the Upper West Side as well as upper Manhattan and a section of the Bronx, has announced the formation of an exploratory committee for a congressional campaign. Espaillat had been rumored to be considering a run for the national seat if a district emerged with a heavily Latino population; he has been a vocal proponent for the creation of just such a district.
“This is a historic opportunity for the state of New York to send a clear and unmistakable message that the growth of the Latino community demands that our government reflect our diversity,” Espaillat said in a statement.
He said he was not announcing which district he would run for, even though federal judge Roanne Mann’s recently released maps would place Espaillat’s Washington Heights district in Rep. Charlie Rangel’s redrawn 13th congressional district.
Blacks and Latinos in Albany are pushing back against the maps, criticizing them for not accurately representing the diversity of New York City. “While it’s premature to target one particular district, given the fact that final district lines have not been settled, launching this exploratory committee is an important step in making sure we are ready when the final district lines are established,” Espaillat said.
Espaillat served in the state Assembly for 14 years, becoming the first Dominican-American to be elected to a state legislature, before winning his seat in the state Senate.
UWS WINE SHOP FIGHTS STATE BILL
WIGS, or Wine in Grocery Stores, may not be on the legislative agenda this year, but many liquor stores across New York still have reason to complain about Albany. City & State reports that Upper West Side wine shop Pour has been urging customers to rally against a budget amendment that would end the practice of warehousing liquor in other states before distributing to local stores and restaurants.
Wine sellers claim the amendment, proposed by State Sen. George Maziarz and Assemblyman Joe Lentol, is an attempt to drive them out of business by the state’s two biggest liquor distributors, Southern Wine & Spirits and Empire Merchants, who already have their storage facilities within state lines.
“Imagine a landscape with only the two largest wholesalers remaining to work with, when today there are in excess of 50,” read an email Pour sent to its customers. “Selections would become painfully limited. Prices would most certainly rise. Service would plummet.”
A spokeswoman for Lentol said the intent of the bill was to level the playing field for New York and its neighboring states, but that the assemblyman would take another look at the data before making a final decision.
BREWER HOLDS FRESH FOOD FORUM
City Council Member Gale Brewer hosted a meeting this Monday with a number of Upper West Side interests to discuss how to get more fresh, local food into homes, organizations and senior centers. One of the major participants was GrowNYC, a nonprofit that works with many of the city’s greenmarkets, and representatives from other groups like Citymeals-on-Wheels, City Harvest, local food banks and senior centers made up the about 40 people who had a productive conversation about where fresh food is most needed and how to get it there, Brewer said.
Some possibilities that emerged from the meeting included delivering bags of produce to drop-off points for seniors to purchase at low cost, about $7, as well as setting up cooking and nutrition classes in the community, organizing bus trips to and tours of farmer’s markets, and getting more locally sourced food to senior center kitchens. “We asked, ‘How do you get affordable fresh food to the neighborhoods?’ and we’re going to be the first to do that,” Brewer said. One of the next steps for the initiative is to work with the city and the Department for the Aging to expand the possible reach of the nascent fresh food programs.
Tags: Adriano Espaillat, butterfly children awareness day, City Harvest, Citymeals-on-Wheels, Department of Ageing, Empire Merchants, epidermolysis bullosa, Gale Brewer, George Maziarz, Grant’s Tomb Criterium, GrowNYC, Joe Lentol, Linda Rosenthal, Liquor, Montclaire Children’s School, Nutrition, Pour, Rafaella “Rafi” Lily Kopelan, Riverside Park, Southern Wine & Spirits, stem cell transplant, Upper West Side, WIGS, Wine in Grocery Stores
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