ALS Ice Bucket Challenge Progress
Presented by Mitsubishi Tanabe Pharma America
Living Well with ALS is an educational program covering a variety of ALS-related topics ranging from the latest in worldwide research, to advice and updates from ALS care experts.
The program features presentations by invited guests and staff followed by a Q&A session. Please consider registering via Zoom for an upcoming Living Well with ALS program or watch previous program recordings below.
For questions about this program, contact Joumana Baroody, RN, BSN, Director of Care Services at joumana@alsachicago.org or 312-932-0000.
Intimacy and sexual health are important parts of everyone’s well-being. Although ALS does not directly affect fertility or sexual function, sexuality is an issue for many people with ALS and their partners. Understanding how ALS affects sexuality is the first step to alleviating problems with sex and intimacy imposed by the disease.
Speaker Joanna Nunez MSW, LCAS, LCSW, CCTP is a native of Fayetteville, NC, born to two career Army parents. After graduating from East Carolina University, she worked for the Department of Defense as an outpatient substance abuse counselor. Seeing a great disconnect in how the Army dealt with combat trauma in soldiers, she left the DOD and opened a private practice in 2009, specializing in Trauma and Substance Abuse. She began working with the ALS Association of NC in 2012.
In February of 2020, the ALS Association of NC added a sixth clinic to the state, and Joanna became the Chapter Liaison for that clinic (Wilmington, NC) as well as the Vidant Clinic in Greenville, NC 2021. She was a featured speaker at the International MND Allied Professionals Forum in late 2022. She hosts two to three ALS-focused Support Groups per month, through the Chapter, and does her best to garner support for the Fight Against ALS with every person she meets.
Intimacy and sexual health are important parts of everyone’s well-being. Although ALS does not directly affect fertility or sexual function, sexuality is an issue for many people with ALS and their partners. Understanding how ALS affects sexuality is the first step to alleviating problems with sex and intimacy imposed by the disease.
Speaker Joanna Nunez MSW, LCAS, LCSW, CCTP is a native of Fayetteville, NC, born to two career Army parents. After graduating from East Carolina University, she worked for the Department of Defense as an outpatient substance abuse counselor. Seeing a great disconnect in how the Army dealt with combat trauma in soldiers, she left the DOD and opened a private practice in 2009, specializing in Trauma and Substance Abuse. She began working with the ALS Association of NC in 2012.
In February of 2020, the ALS Association of NC added a sixth clinic to the state, and Joanna became the Chapter Liaison for that clinic (Wilmington, NC) as well as the Vidant Clinic in Greenville, NC 2021. She was a featured speaker at the International MND Allied Professionals Forum in late 2022. She hosts two to three ALS-focused Support Groups per month, through the Chapter, and does her best to garner support for the Fight Against ALS with every person she meets.
Anticipatory grief is the anticipation of loss, often felt when a loved one is facing a terminal illness. Experts in the field will present information and resources about anticipatory grief, age-appropriate expressions of grief, and resources to cope with the losses associated with ALS.
Presentations:
An ALS diagnosis impacts both current budgets and future financial plans. This webinar will present an overview of financial, legal, and care-choice planning essential for people living with ALS. The information will be presented by an attorney who specializes in the field of elder-care needs. Topics covered will include:
• A review of relevant financial planning steps to consider once a diagnosis of ALS is made, including: trusts, estate planning, documents and information that need to be in place after a person’s passing, and funeral and burial planning
• The different types of end-of-life care documents, known as Advanced Directives, including the difference between each of the documents and how to obtain them
• Options for financial support to provide for the care of the person with ALS, including criteria for: Medicare, Medicaid, SSI, SSDI, and Long-term Care Insurance
About our Speaker: Kathryn Casey, CELA, is one of only a few Certified Elder Law Attorneys in Illinois. She has practiced exclusively in elder law since 2004. Her practice focuses on long-term care planning, estate planning, special needs planning, Medicaid planning and applications, and probate and trust administration. She devotes a substantial portion of her time to helping families plan for the care of a loved one with a chronic care need. Katie represents her clients with a continuity of care that extends from the creation of a long-term care plan through the execution, implementation, and administration of that plan.
Adapting a living environment to meet the changing needs of ALS will become a necessity as the disease progresses. However, with ALS, typical structural home modifications are often not appropriate. The cost, time, and emotional upheaval of having structural modifications done to the home are barrier that most families face.
Assistive technology devices can be used in lieu of structural changes. Environmental modifications can help keep a person safe and help people retain independence for as long as possible. Home modifications can also lower a caregiver’s risk for injury by making tasks such as assisting with transferring and repositioning less physically taxing. This presentation will discuss home accommodation and modifications specific to those with temporary and/or changing needs and will focus on accommodations and safety.
Following the presentation, our speaker & members from our Care Services team will be available for a Q&A session with attendees. This virtual event is free of charge.
Speaker Alisa Brownlee, ATP, CLIPP, CAPS, WSP is the Manager of Assistive Technology Services for the ALS Association, Greater Philadelphia Chapter and is also an Assistive Technology Consultant to the National ALS Association. She has been in the field of assistive technology for over 25 years. Alisa speaks, blogs, writes articles and uses social media to increase awareness of ALS and the use of assistive technology. Her specialty areas are communication, computer access, electronic aids for daily living and home modifications. She is a strong advocate for patient rights with elected officials, insurance companies, and other healthcare providers.
The ALS Association Greater Chicago Chapter invites you to join us for the fifth installment of our virtual ALS Roundtable Teleseries. Experts from across the local Certified Treatment Centers of Excellence will share with us their latest in research. Following the presentation, our speakers will be available for a Q&A session with attendees. Download & share the agenda here.
Presentations and Speakers:
The ALS Association Greater Chicago Chapter presents a Roundtable Teleseries on Fronto-Temporal Degeneration in ALS, including discussion on its clinical manifestation, diagnosis, clinical management and the available resources, locally and nationally. View and print a copy of the agenda here.
Speakers:
For questions or more information, please contact Joumana Baroody, RN, BSN, Director of Care Services at joumana@alsachicago.org. To learn more about The Memory Center, visit thememorycenter.uchicago.edu.
When you or a loved one are diagnosed with a chronic medical condition, not only do you need to prepare medically, you need to prepare legally. This session will address important topics such as Powers of Attorney, Trusts and Wills. What legal options are available in planning and paying for your long-term care, and how can Medicare, Medicaid, long-term care insurance, and personal care contracts maximize your quality of life?
Speaker Kathryn Casey, CELA, is one of only a few Certified Elder Law Attorneys in Illinois. She has practiced exclusively in elder law since 2004. Her practice focuses on long term care planning, estate planning, special needs planning, Medicaid planning and applications, and probate and trust administration. She devotes a substantial portion of her time to helping families plan for the care of a loved one with a chronic care need. Katie represents her clients with a continuity of care that extends from the creation of a long-term care plan through the execution, implementation, and administration of that plan.
Dr. Kuldip Dave, Vice President, Research, The ALS Association, provides the ALS Association's Update on ALS Research.
ALS Care During the Pandemic | Octavia Kincaid, MD - ALS Association ALS Multidisciplinary Clinic Director, NorthShore
COVID 19, ALS, and Breathing | Sara Mirza, MD, MS - ALS Association Multidisciplinary Clinic, Rush University Medical Center
Well-Being During the Pandemic | Erin Zahradnik, MD - Department of Psychiatry, University of Chicago Medicine
What Do Worms Have to Do With ALS? | Raymond Roos, MD - ALS Association Certified Treatement Center of Excellence ALS Multidisciplinary Clinic Director, University of Chicago, Medicine
ALS Clinial Trials and the Healy Platform | Koroush Rezania, MD - University of Chicago Medicine, ALS Association Certified Treatment Center of Excellence ALS Multidisciplinary Clinic
Q & A | Roundtable Discussion Wrap Up and Thank You l Joumana Baroody
