NLMSF News Tracker

June 20, 2023

Advocacy Groups | <b>National Leiomyosarcoma Foundation</b>

Read our news tracker here: https://mailchi.mp/nlmsf.org/nlmsf-news-tracker-8z011ysyoc

* The NLMSF News Tracker offers bi-weekly resources and support information to patients / caregivers / families.

The topics range from:

- New PubMed research updates on Leiomyosarcoma / Sarcoma

- Scheduled patient presentations for patients and families from sarcoma experts updating treatment options, new research

through the LMS LIVE Connection - Research in Review Series of the NLMSF

* Information Sessions for patients and Families:on well-being tips, recorded presentations from experts in the sarcoma medical field,

other organizations that offer insights and guidance on insurance, financial assistance, legal issues that affect work-life for patients,

and more.

-* The Newsletters also describe the NLMSF patient education sessions, such as:

- The ABC's of a new diagnosis / the treatment journey / after treatment guidance

- Clinical Trials Patient Perspectives Network - Roundtable

- Caregiving Counts - guidance for new caregivers with tips from those that have been caregiving

- Survivorship Care Planning - what happens after treatment is completed - the quality of life self-advocacy to have a plan in place

- Listing site of the Sarcoma Center of Excellence and lodging information assistance by the sarcoma center

- What questions to ask at the first appointment - a guide for new patients

- Clinical Trial listings - information resources by sarcoma site and by Clinical Trials.gov

- Testimonials by the research clinicians about the Foundation / from patients themselves about their experiences with the Foundation's support and assistance

- Summary Accomplishments and Goals - Annual Summary reports to patients and families of the accomplishments during the year, and goals for the new year

* Special articles from Patients and Caregivers - we have a designated NLMSF Caregiver Liaison for direct access to assistance

* Reminders of the Patient-Driven Research Involvement in two programs that we continue to support:

- Count Me In for the LMS Project: https://nlmsf.org/newly-diagnosed-and-treatment/

- Rare Cancer Research Foundation - tumor tissue donation:https://leiomyosarcoma.info/cancer-cell-line-project/

* Periodic reminders of the publications from the International LMS ResearchRoundtable

- the Unmet Needs in LMS Treatment https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7924026/

- Clinical Trials for LMS - needed https://leiomyosarcoma.info/wp-content/uploads/2022/03/Kasper2022_Article.pdf

* Reminders of our 24/7 LMS LifeLine HOTLINE 303 808-3437

* Reminders of the need to help support Research for LMS - through various opportunities offered for consideration and to encourage
families and friends to honor a friend in the LMS survivorship challenge.

* Memorial Tribute Pages - to honor the life of a Champion of Hope who has passed for ongoing tribute funding for research

* Gift Shop reminders of t shirts, tote bags for chemo appointments, and more to help fund research projects

* We discuss our Sarcoma Coalition presentations, inviting patients to the "Listen and Learn Series" of the Coalition.

* I am a co-founder of the Sarcoma Coalition: https://sarcomacoalition.us/

* Reminders for the there websites that the NLMSF has (a website reconstruction is under way to consolidate all three into one)

https://nlmsf.org/ https://leiomyosarcoma.info/ https://nlmsflifechange.com/