FACEBOOK CHAT: “Rare Neuropathies: Getting Diagnosed, Getting Help”
WHEN: September 17, 2014 (7-8:30 p.m. EST)
A recent, informative article from the MDA outlined the process for bringing a drug to market. What’s striking is the length of this process, particularly within the context of the search for a cure for Charcot-Marie-Tooth.
Once a drug appears to work effectively in mice, it must undergo further testing before it can be used on humans in clinical trials. Over an approximate two year period, researchers work to determine if that drug has the best chance of having the desired effect on the disease with the lowest possible harm to the patient. Then toxicology studies must be done to show the U.S. Food and Drug Administration (FDA) that the drug is safe and likely to be effective. Further they must determine how to administer the drug and at what dosage. This preclinical research takes five to seven years and costs millions of dollars.
We are pleased to announce the Hereditary Neuropathy Foundation’s Second Annual Dick Sharpe Memorial Golf Outing – in memory of the recent passing of our dear friend, father & board member – to take place at the prestigious North Hempstead Country Club Port Washington, NY on Monday, September 22, 2014.
Grab your shoes and spin CRANK Style NYC!
When: Saturday, September 27, 2014
Where: 1658 3rd Avenue New York, NY 10128 (between 92nd & 93rd Street Upper East Side)
Time: 1:00 – 3:00 pm
Join us November 7, 2014 at A Hollywood Affair to raise money and awareness to fund research for Autosomal Dominant Optic Atropy (ADOA).
Jillian is battling this disease, which involves vision loss, hearing loss, disturbances in the nerves used for muscle movement and sensation, and muscle weakness.
Dress like your favorite celebrity to have your moment on the Red Carpet!
Join us November 15, 2014 in Ft. Lauderdale for an Havana Nights Fundraiser to raise money and awareness to fund research for CMT Type 6.
Thursday, December 4 – Saturday, December 6: Champions for Charity Shop Til You Drop Americana Manhasset, New York
Holiday Shopping Benefit – Shop Till You Drop
Hereditary Neuropathy is participating in the Americana Manhasset’s Champions for Charity®. From Thursday, December 4 through Saturday, December 6, over 70 participating Americana Manhasset and Wheatley Plaza stores will donate 25% of designated pre-tax purchases.
Charity Card Party Brunch and Boutique
Please join us January 23, 2015 at 10:30 at the Broken Sound Country Club, Boca Raton Florida. Join Board Members Iris and Nat Adler for an exquisite brunch and card party to benefit the H.E.L.P fund/HNF at Broken Sound Country Club in Boca Raton, FL.
“Kale is full of nutrients with antioxidant and anti-inflammatory benefits and it provides a healthy amount of chlorophyll. Chlorophyll helps to remove toxins from your body. Considering all of that, isn’t this worth a try?” He actually liked it! His words… “It tastes fresh.” Let me know if you like it, too.