Gaucher Community News - National Gaucher Foundation

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Become a member of the National Gaucher Foundation today! Help us to better serve you and your family. The NGF would like to thank all of its members for partnering with us and supporting our services. There’s no other organization in the US that provides the services we do. On our website you will find up-to-date information on the latest published research, studies, clinical trials, approved treatments and Gaucher treating physicians and locations. We help connect patients to patients and patients to physicians. We provide mentors who help you cope with Gaucher disease, recommended exercises by a registered physical therapist, provide current legislation affecting the Gaucher community, hold national and regional meetings and events and publish a quarterly newsletter for our members. A close-knit and caring Gaucher community is very important to families and individuals who have Gaucher disease. Your membership helps the NGF to provide you and your family with the support and tools you need to cope with Gaucher disease on a daily basis. In addition to free services and collateral materials, members receive conference discounts and NGF’s quarterly newsletter. And, on our website, members can view past copies of Gaucher Community News or see the latest newsletter even before it is mailed. Help support our community programs by becoming an NGF member for only $35 per year. Through your membership, your support helps the NGF to continue these free services to the entire Gaucher community. Your membership helps us to help you. Thank you. Please mail or fax to the National Gaucher Foundation the bottom part of the completed form below r go to our NGF Membership form online at www.gaucherdisease.org Your membership helps sustain support services, programs, education and awareness of Gaucher disease. Please make checks payable to the National Gaucher Foundation, 2227 Idlewood Road, Suite 6, Tucker, GA 30084. Phone: 800-504-3189 or 770-934-2910 Fax: 770-934-2911 email: ngf@gaucherdisease.org web: www.gaucherdisease.org National Gaucher Foundation Membership Form Name______________________________________________________________________________________________ Address____________________________________________________________________________ ________________ City________________________________________________________State________Zip_________________________ Phone________________________________Email_____________________________________________ [ ] I want to become a member of the NGF [ ] I want to make an additional donation [ ] Enclosed is a check for $_________________ [ ] Please charge $_______________to my: Visa_____ Master_____ AMEX_____ Discover______ Acct. #___________________________________________Exp.Date_________________CCV No.___________ Signature__________________________________________________________________________________ [ ] I am a Gaucher patient [ ] I am a family member of a Gaucher patient National Gaucher Foundation, 2227 Idlewood Road, Suite 6, Tucker, GA 30084 Phone: 800-504-3189 or 770-934-2910 . Fax: 770-934-2911 . www.gaucherdisease.org 18
Jonathan M. Cutler Shire ets the icure Submitted by Stephanie Mann Shire Human Genetic Therapies It’s often said that a picture is worth a thousand words. And based on a recent Shire Human Genetic Therapies (HGT) photo shoot with Gaucher patients, everyone involved would probably say that it’s worth so much more. Shire enlisted the talents of Glenn Katz, a professional photographer from Dallas, TX, to take all of the photographs. In addition to his artistic skills and experience, Glenn brought to the sessions something many other photographers lack—he himself has Gaucher disease. “I really enjoyed the opportunity I was given to photograph people on location. Of course, this particular photo shoot was even more special because of the personal connection I had with everyone. It sincerely was a wonderful experience meeting all these people and working with Shire,” said Glenn. Mathew Rinaldi At the end of 2010, Shire reached out to members of the Gaucher patient community to find people interested in taking part in one of three scheduled professional photo sessions in Los Angeles, Miami, or New York City. “We initiated this project because we want to update our educational materials and websites with photos of actual people living with Gaucher disease,” said Stephanie Mann, Associate Product Manager at Shire HGT. here was an overwhelming response from people all across the country: in all, ranging from to 65 years old. The primary goal of this project was to create a photo library of peoplefrom the Gaucher patient community. It also ended up giving people a chance to share stories about living with Gaucher disease. “The session fascinating. I had no idea of all the wo that went into a photo shoot. Having the opportunity to talk with a couple whose bright young son has the disease was particularly touching to me,” said Jonathan M. Cutler of Massachusetts. Phyllis Aquino from New Jersey said, “One of the most interesting experiences I’ve had was participating in the Shire photo shoot. Being able to share my stories with other patients was very positive for me.” The Rinaldi family According to Brenda Rinaldi from Iowa, whose young son Mathew has Gaucher disease, everyone involved sensed a connection and felt special taking part in the shoot. “Mathew was so excited to be a part of the photo shoot,” said Brenda. “He felt like a rock star.” There were many wonderful portraits taken, making this project a tremendous success. “The photo shoots reminded me of why I enjoy working at Shire, and now we have incredible photographs of incredible people to use in our materials,” said Stephanie. Shire does photo shoots from time to time in order to update its educational materials and websites, including the OnePathSM website. Participants in this photo shoot were compensated for their time. 19
Page 1 and 2: Gaucher disease can affect anyone.
Page 3 and 4: Brian E. Berman In our efforts to r
Page 5 and 6: Advancing Treatment Through Ongoing
Page 7 and 8: Individual Gifts $100 - $499 $100 -
Page 9 and 10: Individual Gifts $1 - $99 $1 - $99
Page 11 and 12: Individual Gifts $1 - $99 $1 - $99
Page 13 and 14: Foundations and Donor Advised Funds
Page 15 and 16: In Kind Donations In Kind Donations
Page 17: Bringing Hope to People with Gauche
Page 21 and 22: Aerin, Rick, Randi and Emma Grunste
Page 23 and 24: Gaucher Mentor Program a resource f
Page 25 and 26: Suzanne has been a registered physi
Page 27 and 28: Robin A. Ely, M.D. Medical Director

Gaucher Community News - National Gaucher Foundation

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