Fundraiser Blog

PMSF collaborates with Heterogenous registry

By Ronni Blumenthal, Executive Director We recently had an opportunity to spend some time chatting with Patrick Short, CEO of Heterogeneous, based in the UK. We invited him to explain his company and their mission to our families. We look forward to continued discussions about how we can collaborate. We encourage everyone who is ready to send their information to Heterogeneous also take [...]

PMSF leads coalition to increase research

By Mark Vieth PMSF Legislative Advocacy Consultant/Sr. Vice President, Cavarrochi Ruscio Dennis Associates Gastrointestinal (GI) symptoms –such as constipation and reflux -- are one of the top quality of life concerns for individuals with Phelan-McDermid Syndrome (PMS).  To date, little research has been conducted at that National Institutes of Health (NIH) on GI complications for PMS-diagnosed individuals, and for this [...]

Phelan Lucky shirts available ONLY until Jan 28, 2019

By Jen Randolph Fundraising Chair, Mom to Jack January 7th marked the official start of the 6th annual Phelan Lucky campaign to benefit the Phelan-McDermid Syndrome Foundation (PMSF). For those of you who have been ‘lucky’ enough to have experienced a Phelan Lucky campaign in the past, you know that the excitement that surrounds this campaign is contagious and something [...]

Phelan Lucky

By Jen Randolph, PMSF Fundraising Chair Are you Phelan Lucky this year? Phelan Lucky is set to kick off on the 7th of January and will run for a strict 22 days through the 28th of January. The strict timeline enables us to ship your orders so that you have them for the unofficial holiday of Phelan Lucky, St. Patrick’s Day. [...]

Giving 22uesday Campaign a Success

THANK YOU! Our First Ever Giving 22uesday was a Huge Success! We surpassed out goal! In just 24 hours, you helped the Phelan-McDermid Syndrome Foundation raise over $50,000. You will see on the Giving 22 page that the total is $$49,459.81 but this does not yet include some incentives and donations made directly through the website. We are still counting! [...]

Join the Giving 22uesday Campaign

The Phelan-McDermid Syndrome Foundation is excited to announce our Giving 22uesday campaign. One Day of Giving can have Tremendous Impact Make a difference today in the lives of more than 1700 children and adults living with PMS worldwide by supporting our Giving 22uesday campaign. Currently, there is no cure for PMS but your donation will help us to push scientific [...]

PIE IN THE FACE FOR CHASE – Sunday, Sept 10, 2017

By Diane Linnehan, Program Director Information on the event provided on the Kuehl Family Pie in the Face for Chase website For PMSF, Family Fundraisers are the most inspiring show of love for our children.  Families from around the globe reach out to family and friends to raise awareness and funds to help improve the lives of all affected by [...]

Hope for 22q13 Gala planned for Montreal in April

Tickets are still available for next month’s Hope for 22q13 Gala in Montreal, benefiting the Phelan-McDermid Syndrome Foundation. The exciting event is being organized by the Chevalier and Catania families and they hope to see as many families there as possible. Luciano Pipia from CJAD will be our Emcee for the evening and the Cosma Show Band will play live [...]

Next families take up challenge as “365 Days of Phelan Lucky” comes to end

By Victoria Fedderson Mother to Emily The journey/challenge, (insane and slightly crazy challenge) I started in March 2016 is now complete. Yay! And it’s just beginning half a world away (more on that below). I've been wearing my Phelan Lucky T-shirt every day for one whole year to raise awareness of our daughter’s rare genetic condition, Phelan-McDermid Syndrome. Emily, our [...]

Guests from faraway land make 4th Australia High Tea a story worth telling

By Megan Toole PMSF Australia The Fourth Annual Phelan-McDemind Syndrome Foundation Australia High Tea Fundraiser was held Feb. 26 with an “Alice in Wonderland” theme. Nearly 360 guests attended and the event raised about $15,000. We had two surprise guests, Donald & Kelley Thornson of Missouri. A huge thank you for making the extremely long trip “Down Under.” Kelley said [...]
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