Rare Disease Day 2014 is February 28th

I had never heard of Rare Disease Day until a couple of weeks ago. The goal of RDD is to draw attention to rare diseases as an important public health issue that cannot be ignored. FTD is on the list of rare diseases but shown as Pick’s disease.


If you are interested in supporting RDD 2014, their web site has a list of activities that individuals and organizations can do and participate in. Go to rarediseaseday.us/take-action-now/

In Connecticut, there is an event at the Legislative Office Building, here is the info I got from the organizers:

“From 11am-1pm organizations are invited to set-up their materials and share information about the rare diseases they represent. At 1pm there will be a short program featuring a NORD speaker, a patient representative, a patient organization representative, a researcher and two members of the CT general assembly, Representative Johnson and Senator Gerratana.”  www.rarediseaseday.org/event/united-states/229

The AFTD will participate in an event in Boston, 2/28, 11 a.m. at the State House, Nurses Hall. Katie Brandt, Caregiver & Volunteer Coordinator, Association for Frontotemporal Degeneration will be speaking. More info at rarediseaseday.us/events/events/#Massachusetts

Sponsors: NORD is a partner with EURORDIS in sponsoring Rare Disease Day and other initiatives to improve the lives of all people affected by rare diseases. NORD is the National Organization for Rare Disorders, providing advocacy, education and other services to improve the lives of all people affected by rare diseases. EURORDIS is a non-governmental patient-driven alliance of patient organisations representing 614 rare disease patient organisations in 58 countries covering over 4000 diseases.

Excellent presentation by Sharon Pope at the CT FTD support group meeting

Sharon Pope, an elder care attorney with Czepiga, Daly and Pope, gave us a great presentation on “Preserve What You’ve Worked For, Financing Home and Community Care in CT.” She talked about VA benefits, home care programs, Medicare, Medicaid and transferring assets.

She was clear, supportive, patient and answered a lot of questions. If you are in need of an elder care attorney, I strongly recommend you call or send her an email.

Caregiver Support Group Meeting in Norwalk

alzheimers-184x300The Caregiver Support Group at the Norwalk Senior Center is for caregivers of family members or friends diagnosed with Alzheimer’s, Parkinson’s or Dementia. 

Michele Jakab, Senior Center Social Worker, will share Medicare & Medicaid coverage relating to home health care and other information about caring for loved ones.

There will be Dementia Care Specialists from Wilton Meadows who will provide activities for loved ones while caregivers meet.

Date: February 13, 2014. 10:30am to 11:30am

Location: Norwalk Senior Center, 11 Allen Road, Norwalk Map

The group offers caregivers an opportunity to share their experiences, help others by sharing their ideas, find out about resources and information that might be helpful. Meetings are friendly and informal. Occasionally there are themes and guest speakers.

Meetings are on the second and fourth Thursdays of the month. At the meeting on the second Thursday, there are Dementia Care Specialists from Wilton Meadows who provide activities for loved ones while caregivers meet.

Hosted by Lynn Westfield, the group is free and open to all. Membership in the Senior Center is not required. For more information or if you are interested in participating, please call Lynn at (203) 847-3115 ext. 108 or send an email to her at mow@norwalksc.org.

AFTD’s “With Love” Campaign 2014

Widely recognized as the “Day of Love,” February 14th is just around the corner.

WithLoveTo honor this day, the AFTD is launching its 3rd Annual “With Love” campaign (January 21st – March 7th) to raise awareness of FTD and to raise money for care and a cure for the disease.

In the first two years, AFTD supporters raised almost $30,000 and $56,000, respectively.

The first $20,000 raised through this campaign will be matched dollar-for-dollar through two generous matching gifts from Beth Walter and the Rainwater Charitable Foundation!

For more information about how you can participate, go to http://www.theaftd.org/about/with-love-campaign-2014