March 2015 Volume 38 Issue 1 Nutmeg Chapter: www.myasthenia.org/Connecticut_Nutmeg National: www.myasthenia.org Email: [email protected] Facebook: www.facebook.com/ConnecticutNutmeg Telephone: (203) 733-2705 Connecticut’s Second Annual MG Walk 2015 Goal: $40,000 Saturday, June 6, 2015 East Rock Park, New Haven, CT 1 or 3 Mile Routes Registration Opens at 9:00 AM Walk Begins at 10:00 AM Join us for our second MG Walk at East Rock Park in New Haven sponsored by the Connecticut “Nutmeg” State Chapter for Myasthenia Gravis. Our mission remains as always to see… A WORLD WITHOUT MYASTHENIA GRAVIS. CHAPTER NEWS President’s Corner Welcome spring!!! So glad the snow started melting the last few weeks as I never thought we would ever see the green grass again. We continue to welcome new members who attend our bi-monthly support group meetings. Regarding our Support Group Meetings – the schedule will probably change slightly as we just discovered that St. Vincent’s Hospital Seton Room is under construction. Please check our chapter website for updates for dates and times of changes to upcoming meetings – we did manage to run our support group on Sunday March 16 out of the lobby! Next Support Group to be held at my home: Saturday April 18; 21 Benson Drive, Danbury, CT 06810; 2 to 4 pm http://myasthenia.org/communitysupport/MGFAChapters/Connecticut/SupportGroups.aspx Ever since I first joined the Connecticut Nutmeg State Chapter of the MGFA, I was faced with many administrative challenges, first as the Treasurer trying to file the appropriate paperwork (Form 990) and then second, as the President, trying to maintain our public charity tax exempt status when funds were low, and trying to manage board and annual meetings that were over 50 miles away from my home. Without the help of the members of the board who are also scattered throughout the state of CT, we would not have had the resources to publish this newsletter, nor would we have been able to continue to support the National organization. Our board members are exceptional people and deserve a High-Five!!! Today, the National Board is proposing a change in the organization of the MGFA’s structure to unify the state chapters and the state support groups together as one. We admire the efforts of the National Board as they are all volunteers as are we, and they have put together a very detailed proposal which our local state chapter board will be reviewing and voting on in the upcoming National Conference at the end of April/May. Please know that we will decide our vote based on due diligence. This chapter was formed in 1973 and has provided support to MG patients, caregivers and their families for over 42 years. We hope to be around for another 42 years! If you wish to become a board member, please feel free to reach out to us anytime, we always need volunteers. Don’t forget to check us out on our Facebook page as we approach the beginning of the annual MG Walk to be hosted on Saturday June 6 2015: https://www.facebook.com/ConnecticutNutmeg One last note to all, thank you for your support! Annie Denninger, Chairperson (203) 733-2705 [email protected] The Nutmeg – March 2015 Page | 2 CHAPTER NEWS Walking towards the Ultimate “Finish Line”… a World without MG! The headline above is borrowed from the National MG Walk’s online page (www.mgwalk.org). Let’s join the crowd and walk toward our “Finish Line” at the second Connecticut MG Walk at East Rock Park in New Haven on June 6, at 10:00 a.m. (registration opens at 9:00 a.m.). Rain or shine! Save this date so you will be part of generating awareness, renewing hope, and creating a community of support and strength. Last year, at our first walk, we raised over $30,000.00. Our goal this year is $40,000.00. We will need everyone’s help to achieve this goal. Come to New Haven and meet MG patients, caregivers, family, and friends. It is a great place to exchange information and increase your knowledge about myasthenia gravis. Most importantly, you will walk away acquiring a new MG friend. The best part of the MG Walk is the camaraderie it builds and the comfort you acquire knowing that you are not alone in the battle against this disease. We encourage you to go to www.mgwalk.org/connecticut and register. There you can set up your “team page” for friends and relatives to make contributions. We need volunteers to help us set up, sign in participants, hand out snacks and water, mark the route and keep everything running smoothly! If you are interested in being a volunteer, let us know. You can contact Terri Adams at (203) 206-9532, Toni Brown at (203) 589-3105 or Anna Denninger at (203) 733-2705 to volunteer, or if you have questions or want to know more about the Connecticut MG Walk. Join us at East Rock Park in New Haven. Let’s all walk together as a united group joining the tens of thousands of other MG walkers across the nation in the fight against MG. Certainly, we prefer you, your family and friends come out and walk with us, but if you cannot and wish to make a donation, you may do so by simply by logging on the MG Walk website (see below) and donate toward a particular walker or make a general donation to the Connecticut Walk. www.mgwalk.org/connecticut SEE YOU JUNE 6TH – RAIN OR SHINE The Nutmeg – March 2015 Page | 3 CHAPTER NEWS Meet the Board Members of the Connecticut “Nutmeg” State Chapter. These individuals generously donate their time and spirit to help create awareness of MG and provide support to MG patients and caregivers in the state of Connecticut. Anna F. Denninger, Danbury, Connecticut - Senior Accountant, Tommie Copper LLC - Bachelors Business Administration – Western Connecticut State University - Chairperson, Connecticut “Nutmeg” State Chapter, MGFA - Board Member since 2010 My Cause I was diagnosed with MG in 2007. My MG has progressed from Ocular to Generalized MG. Ever since then, I have made it my mission to share my experiences and possibly share any new medical updates provided to us by our National organization regarding MG with patients, caregivers and their families. My wish is to support my cause as long as I am able until a cure is found. Veronica T. Adams, New York, NY M. Terri Adams, Middlebury, CT - Co-Owner Commemoratives and Arlington, VA - Lead Associate at Booz, Allen, Hamilton Adams and Adams, Inc. Middlebury, CT -BA in Justice; Minors in Psychology and Spanish – American University, Washington, - Former VP, Marketing, Grolier Enterprises, DC Danbury, CT - Masters in Technology Management - BA in Marketing – Teikyo Post University Georgetown University, Washington, DC, - MA in Communications – University of Hartford - Treasurer – CT “Nutmeg” State Chapter, MGFA anticipated May 2015 - Diagnosed with MG in 2009 - Editor – CT “Nutmeg” State Chapter, MGFA Newsletter - CT “Nutmeg” State Chapter, MGFA, Board Member – 1 year - Daughter has MG - Joined to raise awareness and provide - CT “Nutmeg” State Chapter, MGFA, Board Member - support for MG. 2 years - Joined to support daughter in fight against MG. George G. Adams, Middlebury, CT - Co-Owner Commemoratives Adams and Adams, Inc., Middlebury, CT - Former Senior VP, Finance & CFO, Grolier Enterprises, Danbury, CT - First Lieutenant US Army, Vietnam Veteran - BS in Accounting – University of Connecticut - Member of the Middlebury Volunteer Fire Department -Daughter has MG - CT “Nutmeg” State Chapter Board MGFA, Board Member, – 2 years - Joined to support daughter in fight against MG and to raise awareness about this disease. The Nutmeg – March 2015 Page | 4 CHAPTER NEWS Steve Brown, Bloomfield, CT - Account Support Manager/Engineer (Hewlett-Packard Company) - Associate’s in Applied Sciences (University of Hartford) - Bachelor’s in Electronics Engineering Technology (University of Hartford) - Masonic: (Composite Lodge #22 of Bloomfield, Connecticut) Master Mason (Hartford Consistory #80) 32 Degree Mason; Esquire Club of Hartford (President); Boston-Hartford District Sons of Allen Men’s Ministry ~ Southern Coordinator - CT “Nutmeg” State Chapter, MGFA, Board Member – 1 year - Joined to show love, inspiration, and support for my stepson Scott, who has MG. Toni R. Brown, Bloomfield, CT - Licensed Practical Nurse II, Yale New Haven Health; Eli Whitney LPN program; - Associate’s in Science (Gateway Community College) - Southern Connecticut Black Nurses Association - Treasurer & Executive Board; Viola Fludd Missionary Society; Mildred Foster Stewardess Board; Bethel Ministry To Women - past President; Prince Hall Adah Chapter #22 Order of the Eastern Stars- Recorder - CT “Nutmeg” State Chapter, MGFA, Board Member – 1 year - Mother of MG patient. When my son Scott was diagnosed with MG at the age of 23, it was very difficult. I felt my job as a parent was to make everything okay ... this was one thing I couldn’t do. To assist in my feeling of helplessness, I decided to join the Connecticut “Nutmeg” State Chapter to provide awareness and raise funds for research for a world without Myasthenia Gravis. Edward Czaczkes, Wethersfield, CT Partner- Czaczkes and Czaczkes Attorneys at Law, Norwich, Connecticut JD - University of Baltimore BA -American University Member of the Connecticut Bar Association Vice-President - Board Member of CT “Nutmeg” State Chapter, MGFA – 2 years I have Myasthenia Gravis and am grateful for the support of the Nutmeg Chapter. I am also fortunate for the research being done on MG and the advances in the treatment of MG. I sincerely hope that one day everyone with MG may be in remission. Jerry Feldman, New Haven, CT - MBA, University of New Haven - Treasurer and Board of Congregation Mishkan Israel - Boy Scouts of America - MG Patient - CT “Nutmeg” State Chapter, MGFA, Board Member – 9 years - Joined to support others with MG.