Support Group News

NEW!!!  Announcing….

The Rita and Jim Barlow Patient Support Grant

This grant is in honor of Rita and Jim Barlow. Rita is the Vice Chair of The Mastocytosis Society, Inc. Patient Support and Advocacy, who has always welcomed patients and caregivers to our organization since its inception in 1995. Rita is a beam of hope and strength to all she meets. Jim Barlow, Rita’s late husband, was a wonderful husband, father and grandfather. He was not only a great caregiver to his family, but to all in the TMS community who needed help.

Purpose:
It is our intention that this grant will inspire patient support initiatives that start within the medical community. These targeted proposals should introduce novel projects that directly benefit patients and families affected by mast cell diseases. The type of project may vary and we encourage you to think out of the box.

Terms of this grant:
1. Physicians, PHD’s, Physician’s in training, Nurses and Allied Health Practitioners may apply.
2. This Grant shall be up to a maximum of $5,000 and may only used for TMS, Board of Directors approved patient support initiatives that have been outlined in your grant proposal. This grant may not be used for research.
3. Initiatives must be completed within one year of grant approval. A simple budget of money spent and a report on the initiative must be sent to tmsbod@tmsforacure.org within one month of completion.
4. This grant may not have management fees attached and is payable directly to the applicant or the institution they are employed by, at the discretion of TMS.
5. Grants may be considered for renewal if funds are available.

Requirements:
The proposal must include the following:
• Name of applicant(s) • Name of associated medical facility • CV(s)/resume(s) of the primary applicants(s) • Description of the proposed patient support initiative including: • Title • Brief summary for announcement purposes of patient support initiative (150 words) • Full description of patient support initiative (1 page limit) • Potential benefit to patients with Mast Cell Disease • Rough budget estimate with total amount of money requested • Projected date of completion

Questions: tmsbod@tmsforacure.org
Submission: An electronic version of the proposal must be submitted to: tmsbod@tmsforacure.org


October 2017 Springfield MO Support Group Meeting

  

There is a new Mastocytosis support group in Springfield-Branson, MO that recently held another very successful meeting on Saturday, October 14, 2017. This group started meeting in early spring 2017 and is starting to grow! They try and get together about once a month just to visit and share their journeys. The group was started out of the need to provide support to individuals and their families who are dealing with a rare mast cell disease, Mastocytosis/Mast Cell Activation Disorder.

Heather Largent and Gloria Walker are two ladies who have hearts of gold and strong desires to help others who are on the journey of dealing with this rare mast cell disease. Heather and Gloria are the co-support group leaders for the Springfield-Branson group. If you would like to become a part of this wonderful group please contact either Heather h3largent@gmail.com or Gloria gkwraywalker@sbcglobal.net . You can also request to join the Springfield-Branson facebook group by going to Springfield-Branson Mast cell support group and completing the request information. Currently Heather and Gloria are in the process of setting a date for their Holiday meeting get together.

On Saturday, October 15, 2017 the Springfield-Branson support group had 39 participants sign up and had 23 participants actually attend, 6 of whom had never attended a support group meeting before. We registered 4 of the participants to The Mastocytosis Society via the organization’s website. There were participants who had met at prior meetings, new members who were newly diagnosed, caregivers, and people who are still searching for definitive answers to what they are experiencing. The meeting began with an informal meet/greet and the announcement of the new TMS physician-database and instructions on how patients can reach out to their physicians to ask them to enroll. This was followed by Dr. Minh-Thu Le, an Allergist-immunologist who practices in Springfield, MO and is affiliated with Cox North hospital. Dr. Le’s presentation was very informative and she did a wonderful job at explaining the various forms of mast cell disease and how mast cells affect the human body. Once Dr. Le completed her presentation there was a Question/Answer session, with great participation. We wrapped up the meeting by hosting an open forum which gave everyone, patients and caregivers, a chance to introduce themselves and to discuss a topic that they were currently experiencing concerning MCAS/Mastocytosis. The meeting was scheduled from noon – 4:00 but was extended until 5:00, due to the great participation. After the meeting, 13 participants enjoyed a wonderful dinner at Logan’s Steak House. It involved good food, great conversation, new friendships, and hope for the future that with a strong support group great things will happen.

If you are looking for a support group in your area please search under the “support group” tab https://tmsforacure.org/resources/support-groups-2/ and reach out to one of the hosts. A support group can have a positive impact on you but remember that you may also be able to have a positive impact on another member.

Cheri Smith

TMS Support Group Representative

scoach62@hotmail.com

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    July 2017 Chicago Support Group Meeting

 

“It was a wonderful speaker. I appreciated the opportunity to listen and listening to others interact with her. A great meeting. I loved the topic. It is just what I needed. I enjoyed hearing everyone’s experiences.”  Elaine Smith

 “Thank you for another wonderful meeting. I really enjoyed the topic and candor and knowledge of Dr. Barkoff. I always enjoy the very personable interactions with others who are facing similar up hill challenges. These meetings have been of benefit to both me and my husband for several years. Thank you.”  Emily Ploegmanga

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         April 2017 Kansas City Support Group Meeting

 

 

 

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“Support Groups… and what they can do for you!”

April 2017 Kansas City Support Group Meeting shares its experiences – and Dr. Theoharides was there!

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