Community Webinar next week!
Registration is now open for our Fall 2023 Community webinar on Thursday, October 5 at 8pmEST/5pmCST. Please join us to learn about what we have accomplished so far in 2023 (including updates from our recent Epilepsy meeting); what we are planning for the future; and how you can get involved!
*Register even if you cannot attend live to receive a recording.
Defining a Roadmap for SHANK3-related Epilepsy Research:
At a groundbreaking conference on September 27, experts on epilepsy in Phelan-McDermid syndrome (PMS) and on the SHANK3 gene gathered at Boston Children’s Hospital (and virtually). After hearing families describe their experiences with SHANK3-related epilepsy, they collaborated to identify gaps, needs, and challenges both in clinical and basic science, and then developed a set of research priorities and recommendations. A white paper produced from the meeting will define the parameters of CureSHANK's $125,000 SHANK3-related Epilepsy research grant commitment for 2023-2024.
Learn more at our Oct 5th Fall 2023 Community Webinar!
Pictured: CureSHANK secretary Paulina Rychenkova (left) and president Geraldine Bliss (right) at the conference
PMS Awareness Day
OCTOBER 22, 2023
is International Phelan-McDermid Syndrome
Awareness Day!
We are raising awareness starting NOW by
sharing PMS families' social media posts.
To be shared, include photos or video, tag CureSHANK, and use the hashtags
#PMSAD and #phelanmcdermidlife.
*See our social channels below*
All shared posts will be entered into
a drawing for CureSHANK merch!
NOVEMBER 28, 2023
Giving Tuesday
will soon be here!
Please keep CureSHANK in mind as you
plan what organizations to prioritize during this last charitable giving
push of the year.
Donate anytime through our website.
FEBRUARY 3, 2024
Running with a Heart
We will be raising funds and awareness in Houston, TX! Sugar Land Rotary Club has chosen CureSHANK to receive the net proceeds from its annual Running with a Heart - Sugar Land Rotary 5K (and new children's 1K)! Consider registering or sponsoring this event!
CureSHANK is excited to offer a new program for parents and others wanting to hone their advocacy skills. In this initiative led by PMS mother and experienced advocate Joanna Kent, participants will meet monthly to learn, collaborate, and discover their advocacy style. Learn more at the October 5 webinar or apply today!
Biorepository Roadshow
Seeking PMS Families to donate
BIOSAMPLES for biomarker research
CureSHANK is still recruiting twenty Phelan-McDermid families to provide BIOSAMPLES to be used in BIOMARKER research, an important component of treatment development.
This effort is is made possible by the COMBINEDBrain Biorepository Roadshow, a project enabling member organizations such as CureSHANK to collect biosamples from their patient communities at conferences of other member organizations all across the US in 2023.
This effort is is made possible by the COMBINEDBrain Biorepository Roadshow, a project enabling member organizations such as CureSHANK to collect biosamples from their patient communities at conferences of other member organizations all across the US in 2023.
There are still many opportunities to participate all over the US! Please check out our Biorepository Roadshow information sheet via the button below to see upcoming dates and locations and more information. If you are able to participate, contact us at connect@cureshank.org.
Measuring Sleep
Seeking 12-18-year-olds with PMS + interrupted sleep near Boston, MA
Sleep disturbances loom large in PMS. This is why CureSHANK contributed $10,000 to make sure individuals with PMS would be included in this study supported by the Autism Science Foundation and based at Massachusetts General Hospital.
PMS participants will join a larger study aimed at validating the use of a wearable, *at-home* device to measure sleep in individuals with profound autism/cognitive impairment, a population historically excluded from autism EEG sleep research due to challenges with the lab setting.
Seeking 12-18-year-olds with PMS + interrupted sleep near Boston, MA
Sleep disturbances loom large in PMS. This is why CureSHANK contributed $10,000 to make sure individuals with PMS would be included in this study supported by the Autism Science Foundation and based at Massachusetts General Hospital.
PMS participants will join a larger study aimed at validating the use of a wearable, *at-home* device to measure sleep in individuals with profound autism/cognitive impairment, a population historically excluded from autism EEG sleep research due to challenges with the lab setting.
To participate:
- Contact the study coordinator at 617.917.4395 or manoachlab@gmail.com.
- Please let CureSHANK know by CCing or emailing connect@cureshank.org.
**PLEASE NOTE: No autism diagnosis required. Participants will be compensated up to $400 + (local) transportation.
If you haven't already joined our Facebook Group, Phelan-McDermid Communications - CureSHANK, we invite you to take part to learn about CureSHANK events, research participation opportunities, projects, and more!
