tmsforacure.org

 
 
TMS MEMBERSHIP DRIVE
In honor of Rare Disease Day February 28, 2014 and
The 20th Anniversary of The Mastocytosis Society, Inc.

We are sponsoring a Membership Drive with a great offer:
A full year TMS Membership, normally $35.00, now reduced to $20.00 until 5/31/2014!

 


Join TMS    Volunteer TMS


Welcome to the website of
The Mastocystosis Society, Inc.


As the Mastocytosis Society continues our efforts to accomplish our mission of research, education, and advocacy for our patients, their families, caregivers and physicians, we’ve rebuilt our site to make it much easier to find and share important resources related to our cause. As part of our commitment to keeping important information about our organization easily accessible, we have created a more navigable website with additional resources, better tools, and a new visual design to give our visitors a better overall experience. ...Continue reading our welcome message

          Sincerely,

   
          TMS Webmasters
          webmaster@tmsforacure.org
& TMS Board of Directors
tmsbod@tmsforacure.org
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So... What are Mast Cell Diseases???
Mast cell diseases include mastocytosis, where the body produces too many mast cells, and mast cell activation syndrome (MCAS), where even the normal number of mast cells are too easily activated by a trigger to release their contents, called mediators. These mediators can cause a variety of unpredictable symptoms in both children and adults, including skin rashes, flushing, abdominal pain, bloating, nausea, vomiting, headache, bone pain and skeletal lesions, and anaphylaxis. Triggers can be heat, cold, stress (physical or emotional), perfumes or odors, medications, insect stings, and foods. These symptoms are treated with medications including antihistamines, mast cell stabilizers, and leukotriene inhibitors, while anaphylaxis is a medical emergency requiring epinephrine. Mastocytosis can affect skin and internal organs such as the bone marrow, gastrointestinal tract, liver, and spleen. Most patients with mastocytosis have cutaneous (skin) or indolent (benign) systemic forms, but aggressive disease can occur, which may require chemotherapy.

A diagnosis of mastocytosis is confirmed by a bone marrow or skin biopsy. MCAS patients do not fulfill all criteria for mastocytosis but exhibit symptoms, may or may not have increased measurable mast cell mediators (commonly tryptase, histamine or its metabolites) during or shortly after an attack and do respond to the same medications that patients with mastocytosis do.

For more detailed information on Mastocytosis and Mast Cell Diseases please refer to our Research Page (Coming Soon!!!)



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ANNOUNCEMENTS

25-FEB-2014 - TMS Membership Drive
TMS Membership Drive

In honor of Rare Disease Day February 28, 2014 and

The 20th Anniversary of The Mastocytosis Society, Inc.

We are sponsoring a Membership Drive with a great offer:
A full year TMS Membership, normally $35.00, now reduced to $20.00 until 4/30/2014!

You can take advantage of this offer in one of several ways:

- Obtain a first time, brand new membership for this price!
- Renew your membership, regardless of when you last paid, and your membership will be extended one year from its current expiration date!
- Give a gift membership to a friend, family member or physician!
- If you are an Angel Fund recipient, you may extend your membership for another year for this price!

Benefits of membership include a vote in Society elections, a quarterly newsletter, The Mastocytosis Chronicles, as well as a personal copy of the Special Edition of The Mastocytosis Chronicles for Healthcare Professionals, discounts on annual meeting fees, including our exciting 20th Anniversary Celebration at the Mayo Clinic September 17-20, 2014, access to patient care coordination which includes help reviewing your symptoms and helping to manage your referral to an appropriate mast cell treatment center if indicated, and more benefits for members only are being planned! In addition, the more members we have, the more powerful we are as an organization effecting change on behalf of all patients with mast cell disorders! So, do your part to honor Rare Disease Day and join TMS! Every member or potential member can benefit by taking advantage of this Membership drive! How?

- Go to www.tmsforacure.org and click on the Join button on the home page!
- Or, if you prefer to send a check by US Mail, or international mail, please make out the check to The Mastocytosis Society, Inc. for $20.00 and Mail to:
  The Mastocytosis Society, Inc.
  P.O. Box 129
  Hastings, NE 68902-0129.

We can make an enormous difference if we can raise our membership numbers, which are almost at 600 for the first time ever, to 1000 or greater! Let’s do it! Send in your $20.00 now!
Submitted By: TMS Webmaster | 25-FEB-2014 | Take me back to the top


22-DEC-2013 - Boston Center of Excellence for Mastocytosis
Boston Center of Excellence for Mastocytosis

Season’s Greetings from all of us at TMS!

We have been contacted by Dr. Mariana Castells and the staff at the Boston Center of Excellence for Mastocytosis. It appears that there has been inappropriate use of their emergency paging system by some members of TMS. If you need to make an appointment, please call the clinic at 617-732-9850. If you are considering whether or not you should be seen at the Center and would like some help clarifying that from TMS, first become a member ($35.00 per year and free with an angel fund membership for those with financial difficulties), and then contact Valerie Slee, RN, BSN or Mishele Cunningham, RN, BSN at tmsbod@tmsforacure.org. Care coordination services will only be available for TMs members starting January 1, 2014, but there is no impediment to anyone becoming a member. You can become a member by going to our web site www.tmsforacure.org or by sending a check made out to Jim McKee, Treasurer, The Mastocytosis Society, PO Box 129, Hastings, NE 68902-0129.

The Boston Center of Excellence Physicians are restricted by HIPPA laws about how they can function. The physicians cannot speak to any patient who is not registered at Brigham and Women’s and whom they have not seen yet, therefore, it is not possible to call and speak to Dr. Castells and Dr. Akin or any other Brigham physician in advance of a first appointment. Once you have seen them and become their patients, then you may contact them. In an emergency after hours, your physician can call the hospital and page the allergy fellow on-call for a professional physician to physician consultation on how to treat you, but no one can legally directly page Dr. Castells, Dr. Akin, etc. unless you have been instructed to do so by them after having seen them as patients.

Our relationships with these physicians are very important to the care we receive now and in the future. Dr. Castells was very gracious in her request. Please let us all comply with the same grace. Thank you. Val

Valerie M, Slee, RN, BSN, Chair
Patient Referral Coordinator
Liaison, Medical Advisory Board
Board of Directors
The Mastocytosis Society, Inc.
Phone: 508-842-3080
Fax: 508-842-2051
Email: chairman@tmsforacure.org
www.tmsforacure.org

Submitted By: TMS Webmaster | 22-DEC-2013 | Take me back to the top


12-NOV-2013 - Auvi Q Coupon
Auvi Q Coupon

Hello Everyone!

Please find the Auvi Q Coupon at the link below

[Auvi Q Coupon]


Auvi Q Coupon
Submitted By: TMS Webmaster | 12-NOV-2013 | Take me back to the top


29-AUG-2013 - Sarah Gittleman Walk
Sarah Gittleman Walk

WALK-A-THON
SARAH GITTLEMAN RESEARCH FUND
“A RARE DISEASE IN SEARCH OF A CURE”
THE MASTOCYTOSIS SOCIETY

In remembrance of Sarah Gittleman we are holding our sixth WALK-A-THON to support research and bring awareness to the community about Mast Cell Diseases. Your donation is 100% tax deductible, as well as, 100% of all funds go directly for research.

In conjunction with The Mastocytosis Society’s Walk-A-Thon in Greenville, S. Carolina

SUNDAY - OCTOBER 6, 2013 Rain or Shine
9:15 am (registration) 10 – 11:00 am (1.5 mile walk)
HUNTINGTON WOODS RECREATION CENTER
26325 Scotia Road, Huntington Woods, MI 48070
REFRESHMENTS

REGISTRATION FEE: $15/PERSON and $25/FAMILY

Mail to: Gittleman Family
25490 Hereford Drive, Royal Oak, MI 48067

Make Checks Payable To: THE MASTOCYTOSIS SOCIETY –SGF (Sarah Gittleman Fund - SGF)

Donations from non-walkers welcome
DONATE DIRECTLY BY FOLLOWING THIS LINK:
[www.tmsforacure.org/sarah.php]


Submitted By: TMS Webmaster | 29-AUG-2013 | Take me back to the top


5-NOV-2012 - Stanford Survey
Stanford Survey

Good day!

Dr. Jason Gotlib, a member of the TMS Medical Advisory Board and speaker at our conference, has asked us to please post this link and ask TMS to encourage its members and potential members to fill out this survey about mast cell disorders.

[Take The Survey]
This is another opportunity to provide information to help research!

Submitted By: TMS Webmaster | 5-NOV-2012 | Take me back to the top


23-AUG-2012 - NORD Gala Update
NORD Gala Update from Kelli Foster, our TMS NORD Representative

The National Organization for Rare Disorders (NORD) honored members of the U.S. Congress, patient advocates, medical researchers, and companies that have brought new therapies to market on Tuesday, May 15, at Union Station in Washington, DC.
"This is NORD's opportunity to celebrate excellence and to say thank you on behalf of the patient community to those who have advanced the cause during the previous year," said Peter L. Saltonstall, NORD president and CEO. "We look forward to this event each year, and we truly appreciate the accomplishments it honors."

Actress Patricia Richardson of TV's Home Improvement, Strong Medicine and The West Wing emceed the event.

My Personal Highlights From The Evening:

· I was invited to the Gala and SPONSORED by Sigma-Tau Pharmaceuticals, Incorporated. I was seated at the Sigma-Tau table. During dinner, Sigma-Tau’s President, Trevor Jones asked what is life like living with Mastocytosis/Mast Cell Activation Disorder. He wanted to know how a child is affected. So I brought out the photos (electronic version :-) These were photos I have taken during Brooke’s reactions AND some happy photos. I wanted to show Sigma-Tau how “their” medication (Zaditen®) helps to improve the quality of life for those who are affected by this rare disease/disorder. I didn’t realize that during my “informal presentation” that the rest of the table was also listening and watching the photo slideshow. Then Trevor asked if I could get him some printed information on Mastocytosis/Mast Cell Activation Disorder…and I just so happen to have what I like to call – The Mastocytosis Society’s Care Package! Each individual from Sigma-Tau went home with: a copy of the special edition Chronicles, the DVD, a brochure, a pen, a notepad, a pediatric card and of course a business card!
· Trevor Jones - President
· Dave Lemus - Chief Operating Officer
· Lesli King - Senior Manager, Patient Affairs
· Joe Testa - Executive Director of Clinical Operations
· Gianfranco Fornasini - Senior Vice President of Scientific Affairs
· Dr. Brian Schreiber - Vice President of Medical Affairs
· Debra Lewis, OD MBA, Deputy Director of FDA’s Office of Orphan Products Development – recognizing, waving to me and coming over to say hello.
· James Bona, Health Science Administrator R.Ph., M.P.H., FDA’s Office of Orphan Products Development – recognizing me and asking me what is going on with Zaditen® (Ketotifen). Jim helped coordinate efforts in order for me to import Zaditen® (Ketotifen) from the UK.
· Dr. Steve Groft, Director of the NIH’s Office of Rare Disease Research (ORDR) – remembered introducing me at the World Orphan Drug Congress down in DC the month before! Told me to keep up the good work :-)
· Patricia Richardson, the emcee of the event, actress and Patient Advocate – posing for a photo and speaking with me about her father, Brooke and the FDA helping with medication (she started getting tears in her eyes). Patricia understands what it is like to ‘fight’ for your family. Patricia’s father suffered from Progressive Supranuclear Palsy. PSP is a neurodegenerative brain disease that has no known cause, treatment or cure. It affects nerve cells that control walking, balance, mobility, vision, speech and swallowing. “They used to say movement disorder, but have now decided to refer to it as a disease. That’s what it is and when you say a movement disorder, it does not sound as serious and deadly as it in fact is. It is a fatal disease. It is a fatal brain disease.”
· Socializing throughout the evening with “The NORD Family.” I was even introduced to new NORD members/employees!

The Morning After The Gala:
By 7am (keeping in mind that we did not leave from the Gala until almost midnight :-) Sigma-Tau and Swedish Orphan (SOBI) had already been in contact with UDG (the company that handles medication distribution in the UK). If everything goes well, by the end of next week, a 3 month supply of Zaditen® should be arriving at our door! A three month supply for each of us!!!

UPDATE: The shipment arrived – within 7 days!!!
Can you believe I even managed to introduce Sigma-Tau and SOBI during dinner at the Gala!?!?! They mentioned that they never met face-to-face and thought it would be a wonderful opportunity! Wills Hughes-Wilson, SOBI’s Vice President Head of Government Affairs & Policy (who I had the privilege to meet in-person at the World Orphan Drug Congress in April down in DC) told me that Geoffrey McDonough, SOBI’s CEO, wants to meet with me!
A little background... Sigma-Tau (Defiante) manufactures Zaditen® and Swedish Orphan (SOBI) distributes the product in the UK

Submitted By: TMS Webmaster | 23-AUG-2012 | Take me back to the top


13-AUG-2012 - NIH/NIAID Update
August 13, 2012 Update on Changes at NIH/NIAID

In response to concerns from so many patients about Dr. Todd Wilson no longer seeing patients with mastocytosis at NIH/NIAID, I contacted Dr. Dean Metcalfe, Chief of the Laboratory of Allergic Diseases, and asked him for clarification on this issue. He kindly responded quickly with this update, and he secured permission for me to share it with the TMS community:

"Dr. Wilson is early in his final year in the NIAID Transition Program in Clinical Research. This is a five year program designed to prepare promising physicians for careers as independent clinical investigators within either the NIH extramural or intramural program. For his research Dr. Wilson chose to study mastocytosis and has been a terrific asset to the adult mastocytosis program. However, because he wishes to now concentrate on completing a number of research projects, he has requested that he no longer be active on the clinical service during the remainder of his final year in the program. Drs. Calman Prussin and Hirsh Komarow within the Mast Cell Biology Section of the LAD will now take over the care of patients within the adult mastocytosis protocol. Linda Scott will continue as the nurse practitioner on the mastocytosis protocol and Laura Wisch will continue as the study coordinator. Daley Contave will continue as case manager. Bone marrow biopsies will continue to be performed as clinically indicated and in part will be performed by Dr. Kirshenbaum. Dr. Carter within the Mast Cell Biology Section will continue to see patients with pediatric mastocytosis. The adult protocols on idiopathic anaphylaxis are also on-going."

Dean D. Metcalfe, M.D.
Chief, Laboratory of Allergic Diseases NIAID, NIH
Bethesda, MD 20892-1881

We will miss Dr. Todd Wilson very much. He has been a caring and dedicated member of the mastocytosis community for several years. We wish him the best as he moves forward in his research, and in all of his future endeavors.

Valerie M. Slee, RN, BSN, Chair
Board of Directors
Liaison, Medical Advisory Board
Patient Referral Coordinator
The Mastocytosis Society, Inc.

Submitted By: TMS Webmaster | 13-AUG-2012 | Take me back to the top


13-AUG-2012 - Zaditen® (Ketotifen)
Zaditen® (Ketotifen)

With much anticipation we are happy to announce that with the diligence of Kelli Foster our FDA/NORD representative patients with mast cell disorders can now order Ketotifen directly from the manufacturer, please read highlights below and ways to order!!!


BACKGROUND

For the last nine+ months, I have been tirelessly working to identify a safe, reliable and consistent source of Zaditen® (Ketotifen) for my daughter and myself. We have found that Zaditen® helps manage our Mastocytosis and Mast Cell Activation Disorder (MCAD) symptoms. Zaditen® is not available in the US. The only alternative we found was to have it compounded at a pharmacy. Due to personal preferences and concerns, I continued my investigation into procuring the brand name Zaditen® medication and expanded my search internationally. After a number of phone calls and emails between Novartis, Food and Drug Administration (FDA), and various international pharmaceutical companies, I was finally able to trace who "owned" Zaditen® (Ketotifen).


HIGHLIGHTS

Novartis transferred the license for Zaditen® (Ketotifen) Tablets 1mg and Elixir 1 mg/5 ml to Defiante Farmaceutica, S.A. (Defiante) in 2010.

Since 2010 Defiante Farmaceutica, S.A. holds the authorization to commercialize Zaditen® (Ketotifen) Tablets 1mg and Elixir 1 mg/5 ml in the United Kingdom (UK).

For commercial and logistic issues, Defiante Farmaceutica, S.A. signed a distribution agreement with Swedish Orphan Biovitrum Ltd. (SOBI).

In general, the distribution agreement states that Defiante supplies SOBI with Zaditen® and SOBI handles medication storage, supply, marketing and distribution activities within the UK.

Zaditen® (Ketotifen) 1mg tablets are manufactured with exactly the same quality, safety and efficacy profile as the Novartis supplied product. Defiante maintained the same composition, manufacturing method and specifications as Novartis.

The FDA has been very supportive and has guided me through the procedures that should be followed regarding the Personal Use Importation Policy of unavailable medications for patients under the care of a physician. Please keep in mind that the FDA does not promote the use of these products for off-label use but do understand that there are circumstances when a physician may believe under the practice of medicine that the products could be of benefit in certain patients. Nor does the FDA promote the use of a medication unapproved in the U.S. as this would be.

After many conversations with the FDA and because of the newly formed relationships between Defiante, SOBI and Masters Pharmaceuticals Ltd (a global specialty healthcare company with a heritage of over 25 years working with Manufacturers, Hospitals, Pharmacists, Governments and individual patients with the singular objective of 'Improving lives through patient access') brand name Zaditen® (Ketotifen) is available for Mastocytosis and Mast Cell Activation Disorder patients with a valid prescription through Personal Use Importation.


HOW TO ORDER


Secure a signed prescription for brand name Zaditen® (Ketotifen) from your physician.

Contact Julie at Masters Pharmaceuticals Ltd (1-800-969-1152) for product and shipping costs.

Fax the signed prescription for Zaditen® 1mg tablets to Masters Pharmaceuticals Ltd (1-800-969-1153 - Attention: Julie).

Provide appropriate payment (i.e. credit card, etc...) for prescription order.


WHAT TO EXPECT

Once Masters Pharmaceuticals Ltd has received your prescription and payment, they will prepare your prescription for International shipping.

NOTE: All international medication shipments are subject to the FDA Personal Use Importation Policy (see attachment) and US Customs Inspections. You should receive your three (3) month supply of brand name Zaditen® within approximately 10 business days.
The brand name Zaditen® (medication manufactured by Defiante Farmaceutica, S.A. distributed by Swedish Orphan Biovitrum Ltd. (SOBI))
Submitted By: TMS Webmaster | 13-AUG-2012 | Take me back to the top


15-JUNE-2012 - 18th Annual TMS Conference
18th Annual TMS Conference

The 18th Annual TMS conference is rapidly approaching! Register now to join Mast Cell Disease patients, family members, friends, caregivers and physicians in a supportive and educational environment. There will also be plenty of time to mix, mingle and relax. Don't forget to bring your walking shoes so that you may join in the TMS Walk-a-thon Early registrations must be received by October 1, 2012 in order to qualify for the discounted rate shown.

For more information please visit of 2012 Conference page.

TMS is pleased to be able to offer affordable registration rates by subsidizing the conference costs. Actual conference costs are over $300 per attendee. If you would like to make a donation to contribute to the conference fund to help make subsidized rates possible, please indicate your additional tax-deductible contribution. Conference fee includes three continental breakfasts, morning and afternoon snacks, Friday luncheon, Saturday luncheon, transportation to and from the Walk-a-thon, plus conference materials and all presentations. Tickets are also available for the Physician and Volunteer Appreciation Dinner and Celebration Saturday evening. Thank you!

WE ARE NOW TAKING REGISTRATIONS!!!
Pricing (if BEFORE Oct 1st, 2012):
TMS Members - $200
Non-Members - $235
Children (4-13) - $90
Pricing (if AFTER Oct 1st, 2012):
TMS Members - $225
Non-Members - $250
Children (4-13) - $90

One Day Only Registration Options:

Friday Only - $100 (adults), $55 (children 4-13)
Saturday Only - $100 (adults), $55 (children 4-13)

Register for the 2012 Conference here:
[Online Conerence Registration Form]
[Mail-in Conference Registration Form]

[Mail-in Conference Scholarship Form]
Submitted By: TMS Webmaster | 15-JUNE-2012 | Take me back to the top


14-MAY-2012 - NORD Gala
NORD to Host 500 at Event Honoring Rare Disease Innovators

Kelli Foster and Patricia Beggiato, our NORD Representatives, will be representing TMS at the NORD Gala, along with Michelle Burnett, MD, a member of our Research Committee. We have a wonderfully dynamic team working on behalf of all patients with mast cell disorders, and we are enormously grateful for their efforts and dedication!

Sincerely,

Valerie M. Slee, RN, BSN, Chair
Board of Directors
Liaison, Medical Advisory Board
Patient Referral Coordinator
The Mastocytosis Society, Inc.
www.tmsforacure.org

NORD

NORD Press Release

NORD to Honor Members of Congress, Patient Advocates, and Medical Researchers

Washington DC, May 14, 2012-----Some 500 members of the rare disease community will gather in Washington DC tomorrow evening to honor pioneers and innovators seeking to improve the lives of people with rare diseases.

This will take place at the annual Partners in Progress Celebration, hosted by the National Organization for Rare Disorders (NORD). NORD is a patient advocacy organization representing the 30 million Americans who have rare diseases.

Honorees this year will include three members of the U.S. Congress, patient organizations, an initiative launched by the National Institutes of Health (NIH) linking patient organizations with researchers, and companies that have brought new therapies to market for rare diseases within the past year.

"This is NORD's opportunity to celebrate excellence and to say thank you on behalf of rare disease patients to those who have advanced the cause," said NORD President and CEO Peter L. Saltonstall.

The 2012 honorees are:

NATIONAL HEALTH LEADERSHIP AWARDS

  • Senator Kay Hagen (NC) for introducing theTREAT Act
  • Representative Cliff Stearns (FL-6) for co-introducing theFAST Act
  • Representative Edolphus "Ed" Towns (NY-10) for co-introducing theFast Act

PARTNERS IN PROGRESS AWARD

  • Blair Van Brunt of the Shwachman-Diamond Syndrome Foundation and the Massachusetts Biotechnology Association (MassBio) for co-organizing a Rare Disease Day event to inform state legislators

ABBEY S. MEYERS LEADERSHIP AWARD

  • The Pulmonary Hypertension Association for outstanding leadership and representation of its members in education and advocacy

POWER OF PARTNERSHIP AWARDS

  • The scientists of the NIH Rare Diseases Clinical Research Network and the Coalition of Patient Advocacy Groups, in a partnership promoted by the NIH Office of Rare Diseases Research
  • The Cystic Fibrosis Foundation and Vertex Pharmaceuticals, Inc., for their partnership to develop Kalydeco, the first drug to target the underlying cause of cystic fibrosis for patients with a specific mutation

POWER OF PARTNERSHIP CORPORATE AWARDS

  • Alexion, Inc., for developing Soliris for atypical Hemolytic Uremic Syndrome (aHUS)
  • Amgen, Inc., for repurposing the drug Sensipar for patients with severe hyperparathyroidism and too much calcium in the blood who are unable to undergo surgery
  • Genentech, Inc., and Biogen Idec, for successfully seeking approval of Rituxan as a treatment for two rare types of vasculitis, Wegener's granulomatosis and microscopic polyangiitis
  • Pfizer, Inc., for developing Xalkori and a companion diagnostic test for the 5% of patients with non-small cell lung cancer who have a specific mutation
  • Rare Disease Therapeutics, Inc., for approval of Anascorp, for potentially life-threatening venomous scorpion stings
Submitted By: TMS Webmaster | 14-MAY-2012 | Take me back to the top


7-MAY-2012 - NYS BILL S595/A4760
NYS Bill S595/A4760 REVISED COPY

Good Afternoon,

My name is Tara Notrica. I am a married 47 year old mother of a 12 year old boy and a 7 year old girl. On April 1, 2011, I was diagnosed with a form of Mast Cell Disease. I spent years being gravely ill and misdiagnosed. I visited numerous health institutions in various parts of the country. When I was unable to personally travel, my medical records and emails were sent all over the country and even all over the world in my desperate attempts to find out the root cause of my illness. Once I was finally diagnosed, the next battle was to find a treatment plan that would hopefully manage my symptoms and help to restore my quality of life, as there is no cure for the disease.

Over the years, I was not only contending with my health but also another big obstacle that we were confronted with. My house was not eligible for school bus transportation that could be provided by my school district. For years, my husband and I had to find an alternate means to safely and consistently transport my children to and from school, as I was too sick to either drive them or walk them. As a result, I have been strongly advocating for the passage of NYS Bill S595/A4760. Bill S595/A4760 "Allows boards of education to provide transportation to and from school for a child for a lesser distance than two miles if the parent or guardian of the child has a physically limiting disability which renders him or her unable to accompany the child to and from school." On June 14, 2011, Bill S595 was passed unanimously in the Senate. Bill A4760 currently has 19 Co-sponsors and 26 Multi-sponsors. Additionally, I have been able to secure numerous letters of support, including one from NORD which is attached.

At this time, I am reaching out to ask for your support in an effort to get Bill S595/A4760 signed into law by Governor Cuomo. I would be very grateful if you could call,email or write to your local Assembly Member and Senator. I would also like to ask you to please call the Albany office of AssemblyWoman Catherine Nolan at 518-455-4851. AssemblyWoman Nolan is the Chair of the Education Committee where the bill currently sits. Please ask Assemblywoman Nolan to please place Bill A4760 on the Education Committee agenda. Bill S595 continues to once again move quickly through the process in the Senate. Additional information can be found on the websites of NYS Assembly or NYS senate.

If you require any further information, please feel free to contact me at my home at 516-546-8618 or by email at tazielove13@yahoo.com. I look very forward to your support. Thank you for your time and consideration.

Sincerely,
Tara Notrica

NORD Statement about NYS Bill A4760 / S595
PDF version [DOWNLOAD]
Word document version [DOWNLOAD]

Submitted By: TMS Webmaster | 7-MAY-2012 | Take me back to the top


6-MAY-2012 - Tryptase Test Press Release
Article Submissions

Exciting News!

TMS Collaborates with Thermo-Fisher in getting the word out about new, fast tryptase test ! This test can be used in the ER with a fast four hour or less turn around!

We have three ways for you to access the Press Release:

1. Direct Link to the article [LINK]

2. PDF version [DOWNLOAD]

3. Word document version [DOWNLOAD]

Many thanks to Kyle Wall, Martin Mann, Mishele Cunningham, and Patricia Beggiato and the TMS Board and Research Committee for their efforts in this initiative.

Thank you,
TMS Media Relations Team

Submitted By: TMS Webmaster | 6-MAY-2012 | Take me back to the top


19-APR-2012 - Research Volunteer Position Opening
Volunteer Position Opening - Research Committee Members Needed

The Mastocytosis Society (TMS) is currently seeking volunteers to join the Research Committee. Members of this committee will conduct literature searches to help facilitate updating scientific material in existing brochures, educational literature, as well as the TMS website. Additional activities of the Research Committee are listed below.

Requirements and Preferences
Candidates must have a background in biological or medical sciences, especially cancer biology, immunology, mast cell biology, nursing, general medicine, health sciences or public health, medical informatics, allergy, gastroenterology, dermatology, hematology/oncology, cardiology, endocrinology, pathology, pharmacology or pediatrics/any of the above pediatric sub-specialty areas. Individuals with a background in scientific writing will also be highly considered. Basic computer skills are required including proficiency in MS Word and Excel. Use of Endnote and/or other reference article management software would be helpful (experience using MS Access also a plus).

Minimum educational requirements are a BS or BA from an accredited institution, MS/MA or Doctorate preferred. Candidates must be skilled in reading and understanding medical and/or scientific research studies, with the ability to convey such information to our membership, which includes individuals without scientific backgrounds. The time commitment is variable and flexible and will depend on volunteer availability.

Activities of the TMS Research Committee Members
  • Review of literature, current research and mast cell disorder medical advances for patients, their families and TMS; keep informed of such advances in order to serve as scientific advisors to the TMS BOD
  • Attend medical conference scientific sessions [currently the American Academy of Allergy Asthma and Immunology Conference (AAAAI)] and reporting of relevant information to the TMS Board of Directors (BOD) and membership
  • Respond to research committee patient/other interested party inquiries as applicable
  • Maintain a medical/research article database for use by the research committee
  • Advise on development of the Research section of the TMS website
  • Review of research grant proposals for TMS funding
  • TMS Patient survey data analysis and article preparation for publication; administration of the survey database and identification of areas in which the survey data might be useful
  • Review of prospective Medical Advisory Board (MAB) members for the TMS BOD
  • Interact with the TMS MAB, other medical professionals/researchers, biotechnology/pharmaceutical/diagnostic companies, research institutions and related government organizations on behalf of TMS
  • Participate in TMS Strategic Planning activities and develop/monitor a TMS Research Strategic Plan
  • Investigate the development of a national patient registry
  • Other research-related activities that would benefit patients and TMS, as they are identified.
Please submit CV/resume to research@tmsforacure.org. Thank you.

Submitted By: TMS Webmaster | 19-APR-2012 | Take me back to the top


17-APR-2012 - Anesthetic-Induced Anaphylaxis Article
AANA Journal Course: Update for Nurse Anesthetists
Anesthetic-Induced Anaphylaxis By Carol L. Norred, CRNA, PhD
AANA Journal - April 2012 - Vol. 80, No. 2 - Pages 129-140


Link to article on our website:
http://www.tmsforacure.org/research.php

Author's Bio:

Carol Norred

Carol Norred, CRNA PhD works clinically as a nurse anesthetist and is a medical writer. She holds a Ph.D. in Nursing from the University of Colorado Health Sciences Center. She currently practices at several hospitals in El Paso, TX. Her first book, a nursing text written with co-editor Kathy Wren, C.R.N.A. Ph.D., was Real World Nursing Survival Guide: Complementary and Alternative Therapies. Her second book was Anesthetic Pharmacology: A Clinical Review and Compendium. She published several sections in the text Essence of Anesthesia Practice. She has published AANA Journal courses on postoperative nausea and vomiting and reecently published a course on anesthetic-induced anaphylaxis. She has other papers in the Journal of the American Association of Nurse Anesthetists, Journal of the Association of peri-Operative Registered Nurses, Journal of Peri-Anesthesia Nursing, Alternative Therapies in Women's Health, and Alternative Therapies in Health and Medicine. She has conducted multiple research studies on alternative medicine in anesthesia and has reviewed research protocols and manuscripts from multiple professional journals. Additionally, she has lectured on numerous topics in anesthesia including anaphylaxis and anesthetic care of mastocytosis patients. Dr. Norred has served on committees for the AANA Foundation, and currently serves as Education Chair and is a Research Committee member for The Mastocytosis Society.

Submitted By: TMS Webmaster | 17-APR-2012 | Take me back to the top


16-APR-2012 - 2012 Boston marathon
2012 Boston marathon

Genzyme has a team of 12 employees running in the 2012 Boston Marathon to raise money for NORD (National Organization for Rare Disorders). NORD is the consumer organization that advocated for enactment of the Orphan Drug Act of 1983. They monitor implementation of the law, especially encouraging research and development of new treatments for rare "orphan" diseases. Ninety-five cents of every dollar donated to NORD directly supports programs and services for patients and their families. Often, these are diseases so rare that no other source of funding is available.
Each of the Genzyme runners have been paired with a patient partner and represent a rare disease:

Andrew is running for Gail Barbera and Mastocytosis/Mast Cell Disorders (see the blue circle).

Kyle is running for Morgan Palmer and Pediatric Mastocytosis/Mast Cell Disorders (see the orange circle).

To make a donation and read the patient stories visit:

(Gail Barbera)
http://www.firstgiving.com/fundraiser/andrew-scholte/bostonmarathon2012

(Morgan Palmer)
http://www.firstgiving.com/fundraiser/kylekellinghaus/bostonmarathon2012

http://runningforrarediseases.org/

2012 Boston Marathon

Submitted By: TMS Webmaster | 16-APR-2012 | Take me back to the top


9-APR-2012 - Article Submissions
Article Submissions

Hello!

The Spring 2012 Edition of The Chronicles is coming up and we are looking for article submissions! If you would like to submit an article, please email it to us at chronicles@tmsforacure.org. The deadline for submissions for the Spring 2012 Edition will be April 30, 2012.

Article Submission Guidelines:
1. Submit your article as a Word Document or PDF, and include any photographs as attachments in the same email.
2. The file names for both the word document and photograph should be the same as the article name.
3. The subject line of the email should read “Article Submission, Spring 2012 “[Insert Article Name]”
Please note that we cannot guarantee that all submissions will be printed.

We look forward to hearing from you!

Thank you,
..::TMS Media Relations Team::..
Submitted By: TMS Webmaster | 9-APR-2012 | Take me back to the top


2-APR-2012 - Dr. I. Leonard Bernstein
leonard_bernstein

Dr. I. Leonard Bernstein

We just heard that Dr. I. Leonard Bernstein has passed away. He was a beloved and esteemed member of The Mastocytosis Society, Inc. Medical Advisory Board, and many of us on the board who knew him personally considered him to be a friend. He was so willing to give of his time and his expertise, and his dedication to treating patients with mast cell disorders long before they were well-known diagnoses made him a champion to many of us.

Please join us in keeping Dr. Bernstein's family in our thoughts and prayers during this difficult time of loss. His sons continue to work with patients with mast cell disorders in their allergy practice, Bernstein Allergy Group, in Cincinnati.

The Mastocytosis Society, Inc. will be ever grateful for the contributions of I.Leonard Bernstein, MD.

Peace to you, Dr. Bernstein. You are already missed. Thank you for all that you have done for us.

..::Valerie M. Slee, Chair, the Board of Directors and Committees::..

Dr. I. Leonard, age 88, passed away March 26, 2012, beloved husband of Miriam G. Bernstein, devoted father of Dr. David(Cheryl) Bernstein, Dr. Susan(Howard Ain) Bernstein, Dr. Jonathan(Lisa) Bernstein & the late Ellen B. Ganson(Michael Ganson), dear brother of the late Leah Geber, loving grandfather of Daniel(Jaime Aronson) & William Bernstein, Aaron, Joel(Alyce Baier), Rachel & Marisa Ellison, Jason & Andrew(Emily Sanchez) Ain, Adam, Sarah & Philip Ganson & Alison, Joshua, Rebecca & Caren Bernstein. Services Weil Funeral Home, 8350 Cornell Rd. Tues, March 27, 12:30 P.M. Visitation begins at the funeral home at 11:30 A.M. Shiva week will be observed at the Bernstein residence with services Weds, Thurs, Fri, Sun & Mon morning 7:00 A.M. , Tues, Weds, Thurs evenings 7:00 P.M & Sun evening at 6:30 P.M. In lieu of flowers, memorial contributions to the Ellen B. Ganson Fund c/o Rockwern Academy, 8401 Montgomery Rd., Cinti, OH 45236 or the Bernstein Endowment Fund for Allergy Research & Education at the U.C. Foundation, P.O. Box 670544, Cinti, OH 45267. Weilfuneralhome.com


Submitted By: TMS Webmaster | 2-APR-2012 | Take me back to the top


22-MAR-2012 - Web Update
Web Update

Thank you to all TMS members and potential members for you patience and suggestions for the website. We are happy to announce that TMS is now rolling out sections of the TMS website dedicated to 'Patients and Caregivers', and also to 'Physicians and Healthcare Providers'. You will now have access to more content pertaining to Mast Cell Diseases that is also more relevant to you.

For now, you will be able to access these new sections from buttons on the Welcome page. Soon, TMS will be replacing the header menu to make navigation easier for all.

Thanks again to to everyone!

..::TMS Webmasters::..
Submitted By: TMS Webmaster | 22-MAR-2012 | Take me back to the top


22-MAR-2012 - 23 And Me Update
23andMe Update:

News from 23andMe

We have some exciting news to share! Thanks to your participation, our scientists have replicated an association between an inherited variation in the JAK2 gene and risk for developing MPNs. This inherited variation seems to be a strong predisposing factor for acquiring the JAK2 V617F mutation that can occur later in life and is associated with many MPNs. Although still preliminary, our finding supports previously published research and shows that we are on the right track to make an impact in the study of rare diseases.

In February, we introduced the Rare Disease Campaign with information about upcoming recruitment efforts and new website content. Last week, 23andMe highlighted MPN-focused material each day on its website, including both scientific and perspective pieces in our blog (The Spittoon), a "Research Finding" on the discoveries page, and a new Preliminary Research Report about inherited variation in JAK2. Many of these updates were possible thanks to your participation and support.

Over 500 people are now a part of this MPN study and we are already starting to see interesting results. The closer we get to 1,000 participants, the closer we get to finding more answers. Please help continue to spread the word.

Warm Regards,
Kimberly Barnholt, PhD
MPN Research Project Manager

www.23andme.com/mpn

MPN highlights:
SNPwatch: The "Jist" on JAK2 and Myeloproliferative Neoplasms (Blog post on 3/5/12)
Silver Linings in Rare Disease (Blog post on 3/7/12)
When DNA Discoveries Hit Close to Home (Blog post on 3/9/12)
Rapid Replication of Research in MPNs (Research Finding)
Preliminary Research Report on JAK2 (new)

Submitted By: TMS Webmaster | 22-MAR-2012 | Take me back to the top


1-MAR-2012 - Angel Fund Program
Do you feel like an angel? Are you in need of an angel?

This is just a reminder that throughout the year you can donate to The Mastocytosis Society's "Angel Fund Program" which is designed to help patients and families that are in need cover their annual dues. Angel Fund Waivers are completely confidential and recipients are only told their annual dues have been paid by an anonymous donor. Every $35 donation pays the dues for a new member! You can donate at any time using a Credit Card, Paypal through our website (http://www.tmsforacure.org/donate.php), or by writing a check to: TMS, PO Box 129, Hastings, NE 68902-0129, and designating an Angel Fund donation.

In addition, if you cannot pay dues, or know someone who cannot, please forward this information to them. TMS is committed to patient advocacy and this is one of many ways in which we can help each other through fostering community and patient education. You will find this on every Membership application and Membership renewal form, as a reminder of the Angel Fund Waiver Program:

'Patients who are unable to afford to pay dues at this time can have their dues waived through the "Angel Fund Program". This Program was established to assist Patients with a Mast Cell Disorder to pay their dues. If you would like for your dues to be paid through the "Angel FundProgram" due to financial hardship, please send a letter requesting an Angel Fund Waiver (to the address above) or an email to membership@tmsforacure.org.'

Submitted By: TMS Webmaster | 1-MAR-2012 | Take me back to the top


1-MAR-2012 - 23 And Me
23andMe Myeloproliferative Neoplasms Research Initiative:
Information and Enrollment Update
by Susan Jennings, PhD

The last issue of The Chronicles contained a notice regarding 23andMe's Myeloproliferative Neoplasm (MPN) Research Initiative. 23andMe, a personal genomics company based in Menlo Park, CA, is in the process of recruiting 1000 patients with MPNs, including all forms of mastocytosis, for a research study that was started in August 2011. This project aims to identify differences in the human genome that might predispose a person to a MPN. 23andMe normally provides clients online access to information about their personal genomic data for a fee, allowing a person to learn about various extensions of this data, including diseases to which they might be predisposed, and information about their ancestry. The fee will be waived for eligible research participants, who will be able to view explanations of how their genomic data relates to a list of currently analyzed diseases and traits (provided on the company website, https://www.23andme.com) and explore their ancestry, in addition to other online activities and information. Participants will receive a "free lifetime subscription to access all features of the 23andMe Personal Genome Service". In addition, as a study participant, you can "share your knowledge and learn from others who, like you, know what it is like to live with a myeloproliferative disease. Ask questions, make connections, form a communitygain access to early discoveries and up-to-date science about MPNs and available treatments" (taken from https://www.23andme.com/mpn).

Other research projects have been conducted by 23andMe as well: "The 23andMe MPN community is modeled on its highly successful Parkinson's Disease (PD) and Sarcoma communities. In two years, the PD initiative has not only recruited and analyzed over 5000 participants, but has led to published research findings including two novel gene associations for PD. In just over a year, the Sarcoma initiative has recruited and analyzed data from over 500 participants, proving to be a valuable research platform for rare disease communities. PD and Sarcoma research efforts are ongoing" (taken from the news section of https://www.23andme.com). The company does not provide diagnoses, although information obtained through the service can be discussed with your doctor to help consider possible lifestyle choices or medical monitoring. It is also possible to participate in the study without reviewing your personal genomic data, if you are not comfortable learning more about it.

Dr. Jason Gotlib from Stanford University School of Medicine and Stanford Cancer Center is a member of 23andMe's MPN Scientific Advisory Board. He recently told TMS that there were roughly 400-500 people registered for this MPN research project, so if you are willing to participate and believe you are eligible, the study is currently still open to enrollment (as of early December 2011). He also mentioned that, to his knowledge, the company is not restricting the percentage of patients in this research group who have mastocytosis.

You can find out more about this research project by visiting https://www.23andme.com/mpn or about the 23andMe service at https://www.23andme.com and at https://www.23andme.com/howitworks (this page also includes information regarding your privacy relating to genetic information). There are some restrictions on where they can send kits (including within the U.S.), so if you are interested in participating, make sure to review this information first. A list of countries to which they can ship is also provided on their website. An online eligibility form for the MPN Research Initiative is available at https://www.23andme.com/mpn/codereq. The form includes questions related to what your specific diagnosis is, who made that diagnosis, and general testing done to determine it. Eligible patients must be diagnosed with an MPN by a medical professional and be able to receive their kit where 23andMe ships. As communication for this research is web-based, participants do not need to be close to a clinical research center.

There are two parts to this MPN study. First, if 23andMe determines that you are eligible to participate, you will receive a kit in the mail for saliva collection. You will be asked to register your kit and give informed consent for study participation online and to mail your sample in for analysis (shipping is free). After receiving the saliva sample, DNA from cheek cells is analyzed to identify differences in it that might predispose someone to a list of diseases and that can help identify a person's ancestry (and other characteristics). The second part of the study involves collecting information online through specific surveys related to your MPN background, experience, symptoms and responses to treatment.

Please make sure that you thoroughly review the 23andMe website to understand exactly what participation in this study involves before you submit the enrollment form.

Submitted By: TMS Webmaster | 1-MAR-2012 | Take me back to the top


1-MAR-2012 - 2012 Annual TMS Conference
SAVE THE DATE

The Mastocytosis Society, Inc.
2012 Annual Conference
October 11-14, 2012
in Bellevue, Washington

CME and CE Credits will be available
- Theme: An Integrative Approach to Mast Cell Disease
- Bellevue Downtown Courtyard Marriott Hotel
($89 - $99 nightly room rates, $129 suites)
- Email: conference@tmsforacure.org
- Website: www.tmsforacure.org
- Hosted by the Pacific Northwest Support Group

Submitted By: TMS Webmaster | 1-MAR-2012 | Take me back to the top


1-MAR-2012 - Welcome Dr. Afrin!
Welcome aboard Dr. Afrin!

Dr. Lawrence Afrin

The TMS Board of Directors is delighted to announce that Dr. Larry Afrin, of the Medical University of South Carolina, has agreed to serve as a member of the Medical Advisory Board of The Mastocytosis Society. The Board, Research Committee, and members look forward to working more closely with Dr. Afrin in the future as we learn more about mastocytosis and mast cell activation syndrome!

Submitted By: TMS Webmaster | 1-MAR-2012 | Take me back to the top


12-JAN-2012 - Novartis Recall
Novartis Recall

It has come to our attention that Novartis has recently recalled Bufferin, Excedrin, Gas-x Prevention, and No Doz. This recall is due to bottles being found that were contaminated with broken tablets of other medication. The presence of broken tablets could cause a potential overdose or allergic reaction. Patients with Mast Cell disorders are particularly sensitive to allergic reactions which makes this recall so important. Please do not take any of these medications until you consult the Novartis website to ensure you do not have one of the affected lots. The website also includes information for how to return any recalled product to Novartis. Please consult your pharmacist if you need to find a replacement for these drugs until they are available on the market again.

The website to consult is:
http://www.novartis-otc.com/otc/index.html
Submitted By: TMS Drug Shortage Committee | 12-JAN-2012 | Take me back to the top


 
 
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