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NJSAC: The Central Registry of NJ Stroke Survivors The sate of New Jersey does not keep separate stroke statistics. When called upon for the number of strokes that occur in New Jersey residents each year, a fee of $200 had to be paid so that stroke information could be separated from cardiovascular diseases in general. There is also no record of the number of stroke survivors in New Jersey. NJSAC is now the central registry of NJ stroke survivors. In 1999, the first year of operation of NJSAC, two hundred and twenty stroke survivors became members. Free registration of NJ stroke survivors entitles the members to receive this newsletter which is published quarterly. It provides the latest information about stroke and long term recovery. Members of NJSAC get support, help and meet new friends who understand and share the unique problems caused by stroke. A wonderful time was had by those who attended the Holiday Party held on December 15. Although the wind, rain and terrible traffic conditions kept a lot of members away, the people who were able to come enjoyed the musical entertainment provided by music students from Montclair State College. A wide variety of refreshments were brought by those who came, and there was much networking and sharing between stroke survivors and family members. Mary Jo introduced Allen Becker, stroke survivor and former financial director of a non-profit organization, who is now working as a volunteer fundraiser for NJSAC. Allen has extensive experience in grant writing and organizing and running fund raising events. Allen spoke about his ideas and visions for raising funds for NJSAC so we can increase our services for members. He also spoke about the need for other stroke survivors and family members to participate on the fund raising committee. A special thanks to all the people who contributed to the success of the party: David Chaffin and Mario Virgilio, both stroke survivors and Founding Trustees of NJSAC; Sal Pellegra, stroke survivor, and his wife Ann; Cathy Coughlin, stroke survivor; Ann Sivestrini, supporter; and Beth Candido and her children Talia and Geena, Missy Iemmello and her children Anthony and Giovanni, Lauren Candido and her daughter Danni, all family members of a stroke survivor. Our thanks to Jill DeTrolio, manager of Deerfield Adult Day Care Center for letting us use the beautiful facility for our party and to Larry Corbo for donating the money to purchase the new coffee urn. We also thank those who made the following contributions for our Chinese Raffle:
Please show our gratitude by patronizing these contributors and thanking them in person. Since the goal of getting 100 people to donate $100 or more to NJSAC was established in July of 1999, $1000 was donated to NJSAC by the people who were listed in the last newsletter. Since then the following people have donated $100 or more to NJSAC: James Archinaco, stroke survivor THANK YOU! NJSAC now has an experienced fund raiser on board. Allen Becker, stroke survivor and former financial director of a non-profit organization, is volunteering his time to work for the success of NJSAC. Allen has extensive experience in grant writing and organizing fund raising events. He has already started working with Mary Jo on writing grants and our first big fund raising event. A dinner/dance and silent auction will be held in September. Watch for our "Save the Date" cards in the mail. If you are interested in helping with fundraising, call Allen Becker at the center 973.759.9900. NJSAC is very lucky to have Allen working for us and we welcome him. Get Ready for the Gala International Benefit We need your support and help to make this event successful and provide NJSAC with the funds to carry out its mission. On September 17, 2000, the First Annual Gala Benefit will be held at the Marlboro Inn in Montclair, NJ. Watch for invitations in the mail and plan to support this major fund raiser. A raffle will be held the night of the Gala for a 1/2 carat diamond pendant necklace that was donated by Ted Levy, caregiver and Helaine Levy, stroke survivor. Please buy or sell the raffles to friends and supporters. Mark the date on your calendar. Take an ad in the Ad Book. Sell ads to family and business acquaintances. Plan to come to the event and fill a table with your family and friends. Participate in the Silent Auction. We are looking forward to a fun-filled night of socialization and entertainment by the members of NJSAC. We invite our members and families to join Tim Deacon in the entertainment. Tim already displayed his talent on the piano by playing for us at the Easter Party in April. What talent do you have? Can you sing, tell jokes, play a musical instrument? Call and add your name to the entertainment list. Twice-Monthly Program to Start in June Coming Soon! Get Ready for the Gala International Benefit Easter Party Was Fun; but Attendance Was Poor Mother Nature provided us with pleasant weather for our Easter Party that was held at the Deerfield Senior Day Care Center in Totowa. A variety of delicious desserts were brought in and shared by the 26 stroke survivors and their families who socialized and networked with one another. A Chinese Auction and 50/50 raffle were held to raise funds for NJSAC. Thanks to Timothy Deacon, stroke survivor, for providing the entertainment by playing the piano, and Jill DiTrolio, manager of Deerfield Day Care Center for allowing us to use their beautiful facility again. Continue Speech Therapy At Home Bungalow Software distributes computer-based therapy software specifically for aphasia. Full details and FREE trial versions of their software are available at http://www.bungalowsoftware.com You can also reach them by phone at 503.648.0518 Be sure to tell them that you saw their name in the NJSAC Newsletter so that we can build credits to obtain the programs for NJSAC. An article in the January 2000 AARP Bulletin reported that Medicare beneficiaries who require physical, occupational or speech therapy can now receive as much therapy as is needed. Two years ago Congress limited beneficiaries each year to $1,500 of occupational therapy, plus $1,500 of physical or speech therapy, or a combination of the two. Congress suspended the caps in December after enrollees complained that the caps were severe. Those interested in these services should call the therapy institution of their choice and tell them they want to be evaluated for further therapy. If the institution is unaware of these changes, tell the Case Manager to call the Medicare office for the update in this area. Since the goal of getting 100 people to donate $100 or more to NJSAC was established in July of 1999 $XXXX was donated to NJSAC. The people who have donated $100 or more to NJSAC since the last newsletter are: Ian Doris, stroke survivor THANK YOU! The twice monthly creative arts therapy programs that were started in June as a summer pilot program will continue into the fall and winter. This is a result of the request of those who have been attending the programs. New friends were made while participating in the activities, enjoying refreshments and networking with other stroke survivors, caregivers and family members. The programs are held on the second and fourth Fridays of each month. There is a charge of $10 per family to help pay for the therapist and refreshments. Plan to come and enjoy these combined therapy and networking programs. Medical personnel from Main Street Medical Group will be at the meeting at Deerfield Senior Center in Totowa on August 25, 2000 @ 7:00pm to familiarize our members with the satellite and the services that they will make available to our members. Main Street Medical Group has become a satellite of NJSAC because of their special interest in stroke survivors and their long term recovery. Stroke survivors, their family and friends are invited to meet the representatives and ask questions. Main Street Medical in Woodbridge Becomes a Satellite of NJSAC NJSAC now has a satellite located at Main Street Medical Group. 228 Main Street, Woodbridge, NJ. Main Street Medical Group us a new and large addition to our organization. They provide traditional medical treatment, rehabilitation and alternative medical care such as therapeutic massage, chiropractic care, hydrotherapy, nutritional counseling, homeopathic care, and will soon be adding speech therapy. The central location of this facility makes it accessible to many members who could not participate in the programs that NJSAC holds in Passaic and Essex Counties. On September 23, 2000 from 1pm to 4 pm, and open house will be held for our members to tour the Main Street Medical facility and meet the staff. You are urged to come and see how easy it is to reach from all areas of New Jersey. Refreshments will be served and all of your questions will be answered. Call 732.750.2556 for directions. Coming Soon! Counseling & Rehabilitation Services @ William Paterson Information gathering meetings were held with under 60 and over 60 stroke survivors at William Paterson to determine individual and group needs of those who attended. The lack of services and the lack of information available for stroke survivors and care givers was a recurring theme. A survey for caregivers of stroke survivors is being prepared by Dr. Bruce Diamond. This tool will be used will be used to develop individual counseling and support services to help caregivers cope with the unique problems and stresses that result from being the care giver of a stroke survivor. A grant application is being prepared for a computer based Virtual Stroke Support Center that will provide live audio-video interaction with health care professionals to help provide guidance and answer caregiver/patient questions. In addition, animated instructions on exercises and therapy, as well as list of resources for obtaining information of all kinds related to stroke will also be provided. Outcomes and rehabilitation research will be done by Dr. Diamond and colleagues based on participant needs. The clinical intervention/rehabilitation research will involve individuals and small clusters of individuals (i.e., 2 people) with similar needs and problems. Since the goal of getting 100 people to donate $100 or more to NJSAC was established in July of 1999, $3,000 was donated to NJSAC. The people who have donated $100 or more to NJSAC since the last newsletter are: Evelyn Reinhard in memory of Gloria Duffy THANK YOU! The Fabulous Duprees - Fabulous @ Gala NJSAC's first Annual Gala Benefit was held on September 17, 2000 at the Marlboro Inn in Montclair. It was a magical and nostalgic night with the entertainment supplied by The Fabulous Duprees, who sang songs from the '60s. We were honored by the attendance of Shirlee Gross, sister of the founder of the Palm Springs Stroke Activity Center after which NJSAC was modeled. She was the lucky winner of the 50/50 which she donated back to NJSAC. We were also honored by the presence of Sally Carr, stroke survivor and initial benefactor of NJSAC. Sally flew in from Palm Springs, California to attend the Gala. She spoke about her recovery from stroke through hard work and support from her family. The Diamond Pendant was won by Ruth Fowler. Stroke survivors, supporters, family and friends enjoyed wonderful food and a delicious dessert table. The only negative thing about the evening was the poor support of the Gala by NJSAC members. Coming soon... Open House at Main Street Medical Members of NJSAC came to the open house on Saturday, September 23rd to tour our new satellite location, and hear about the services. Frank Campione, Physician Associate, discussed the many services that are available at Main Street Medical Group, PC. If you missed the Open House, call Frank at 732.750.2556. Make an appointment to tour the facility and discuss what Main Street Medical can offer you for improving function and continuing recovery. Remember: If you are refused coverage by your medical carrier, Main Street Medical will provide free therapy.
Sound Based Therapies: Help for Stroke Survivors? Sound based therapy: What is it? Check back soon... NJSAC & AHA's Essex County Walk For Stroke Survivors October 22, 2000 was a perfect day for participating and walking to raise money to help those who have had a stroke. The bright sunshine and cool weather kept those who were walking comfortable and in high spirits. NJSAC was represented at the Walk by members, families and friends who solicited funds from supporters for walking. Each walker received a free T-shirt from NJSAC as a thank you for their help. Other members, also wearing NJSAC T-shirts, manned the NJSAC booths in the Health Fair area. They sold Cook Books and T-shirts and spoke to those who stopped at the booths about NJSAC. The T-shirts are all Size Extra Large, black with the NJSAC logo in white. If you would like to purchase a NJSAC T-shirt, call 973.759.9900 or email info@njsac.org The cost of one T-shirt is $10 plus $2 shipping. Since the goal of getting 100 people to donate $100 or more to NJSAC was established in July of 1999, $5,200 was donated to NJSAC. The people who have donated $100 or more to NJSAC since the last newsletter are: Jan Friedrich THANK YOU! | ||||
