Family Fundraisers

Our Families, Our Foundation. The Phelan-McDermid Syndrome Foundation is fortunate to be composed of so many courageous families. As a direct result of our families’ passion, motivation, and innovative fundraisers, PMSF can continue to achieve goals and work toward our mission.

PMSF is forever grateful to the families who take that step into fundraising and become partners and leaders in providing a better quality of life for those living with the challenges of Phelan-McDermid Syndrome (PMS). Through our collective efforts our foundation can change the PMS landscape and offer hope for the future for everyone affected by PMS.

Click on the buttons below to access toolkits that will help you start your own family fundraiser. Scroll through the photos and read the inspirational words of families who have given and received joy through their fundraising efforts.  Have questions, ideas or need some creative help? Contact our Fundraising Chair.

#LoveforLola

The #LoveForLola legging fundraiser was a fun and creative way to raise awareness for Phelan-McDermid Syndrome. I designed the leggings with a pink heart to represent my daughter Lola. I collaborated with Goldsheep to create stylish and meaningful merchandise, which is manufactured in Orange County, California.  Lola and I are very active and exercise daily so this was the perfect product to represent our love for fashion and philanthropy. My hope and vision is to one day find a cure for Lola. Our family believes that unconditional love and intense fundraising are the key ingredients to help PMSF one day find a cure. You can follow our love_for_lola Instagram page and see for yourself how an idea and love can create much-needed awareness for this rare disease.

loveforlola

My hope and vision is to one day find a cure for Lola. Our family believes that unconditional love and intense fundraising are the key ingredients to help PMSF one day find a cure.”

– Briana V.

Jackson’s Trivia Night

Jackson’s Trivia night is in honor of our son Jackson who is 10 years old and was diagnosed with PMS in February of 2009. Jackson’s Trivia Night is a very fun night of trivia that is comprised of teams of 8 people per team, the format is 10 rounds of 10 questions for each team to try to answer. We have done 2 trivia nights that have raised approximately $22,000. What do you need? A venue, lots of family and friends and some technology like a laptop and a projector to display the questions. There isn’t a better feeling in the world to have so many people come support your PMS child, it gives me goosebumps every time I think about it.

There isn’t a better feeling in the world to have so many people come support your PMS child, it gives me goosebumps every time I think about it.”

– Todd G.

Logan’s Heroes

Hello from Logan’s dad. We host a benefit called Logan’s Heroes. This is a benefit that evolves around a motorcycle cruise through the thumb of Michigan. The reason we chose this type of benefit is because we know motorcycles and riders. A benefit can be based around anything whatever your field of knowledge is from boating to checkers. The point is trying to get as many people together as possible. Which opens up many possibilities for fundraising through auctions, and raffles. you had much luck by tapping into our local businesses for help with items to donate and never be afraid to even ask for cash as this is the final goal. It’s never easy asking for help. But it is exciting to see how many people are eager to help! Make sure you have some education about how funds will be used like research and education of parents and Doctors that our Foundation does. Do not be afraid to ask family and friends for help! Local clubs are a good avenue but most expect you to do the heavy lifting, which is fine because getting a good venue is key. We’ve had great luck in joining our local Eagles Club and we volunteer to help them as much as we can with other benefits. Much can be learned on do’s and don’ts by attending other benefits and talking to the organizers.

A benefit can be based around anything whatever your field of knowledge is from boating to checkers. The point is trying to get as many people together as possible.”

– Mike L.

Kyle’s Angels

Kyle’s Angels is a project I came up with in 2008 to help raise funds for the PMS foundation. A Kyle’s Angel is an angel hand made of ribbon. I started just selling at the International Conference but in 2012 I took to our local community and started selling during the holidays. So soon after I started branching out to other county’s and even other states so we not only sell in Missouri but go to Arkansas, Kansas and heading to Oklahoma soon. In 2012 our family decided to start Kyle’s Angels Scholarship program at the foundation. This is a Scholarship that new families can apply for to help with hotel accommodations under the qualification and rules of the foundation.

Kylesangels

Soon after I started branching out to other county’s and even other states.”

-Kelley T.

Pie in the Face Challenge

The idea for our Pie in the Face for Chase event was born during the time that ALS ice bucket challenge was in full glory. We had accepted our challenge and decided to change the game and challenge our friends to do something to raise awareness for Phelan McDermid Syndrome, and what is more fun than pieing someone in the Face. Our wonderful friend Dave Hoffenberg took it one step further and turned it into an event. Now every September, we have a team of 22 local celebrities who graciously volunteer their time and faces to raise money for Chase and PMSF. We are going on the fourth year and have added more fun each year with “golden pies” and “pies from afar”. The event is always a blast with local music and a silent auction. We even have some other PMS families now coming to Vermont to participate! We hope to continue the fun and awareness for many years to come.

Pie Challenge photo

The event is always a blast with local music and a silent auction. We even have some other PMS families now coming to Vermont to participate!”

-Annie and Rick K.

Annie’s Golf Classic

Annie’s Golf Classic is a charity golf tournament that is held in the Dallas Ft. Worth area. Net proceeds of the tournament go to three non-profit charities:  Phelan-McDermid Syndrome, Folds of Honor Children’s Fund, a national organization which provides scholarships to children of military veterans who have been killed or injured serving our country, and Victory Horse Therapy Center, which is a local therapy center that provides disabled riders with horse therapy.  Since 2009, there have been seven tournaments that have raised over $255,400 for these charities.

After going to the PMSF biennial family conference, we were inspired to help raise funds for PMSF.  We enjoy golf and created the tournament in honor of our daughter, Annie, who is 18 years old and has Phelan-McDermid Syndrome.

With close to 240 golfers, Annie’s Golf Classic has grown to become one of the premier charity golf tournaments in the DFW area. It takes months of planning and a lot of work, but we are blessed to have several friends who help with organizing this event.  Annie’s older brothers, Anthony and Joe, have been involved with helping stuff envelopes, transporting boxes as well as golfing in the tournament. Besides teaching them to serve others, it’s taught them how to work together with others and see how hard work can pay off and that raising money for charities can be fun too!

Annie

Annie’s older brothers, Anthony and Joe, have been involved with helping stuff envelopes, transporting boxes as well as golfing in the tournament.”

-Veronica F.

Hope for 22q13 Gala

When our son Anthony was diagnosed back in July of 2015 at the age of 15 months, we were, as all parents would be, profoundly heartbroken. We reached out to the Phelan-McDermid Syndrome Foundation and within months we became friends with so many families around the world whose children were also affected by the syndrome. As a result, we also came into contact with Carmela and Joe, who to our surprise lived just minutes away from us. We even had some friends in common so we immediately became very good friends.
The idea of planning a fundraiser event was always in our minds, but between therapies, work and caring for our children… we put it aside. In July 2016 we attended our first Phelan-McDermid Syndrome Foundation Conference and after witnessing all the efforts and dedication of the Foundation and the other families, we felt the need to give back to the Foundation and we were inspired to begin planning the HOPE for 22q13 Gala. Our vision for this Gala is that it will be an annual event which will take part in different parts of the World and we are hoping to see other families take on the Challenge…

Hope for 22q13

Our vision for this Gala is that it will be an annual event which will take part in different parts of the World and we are hoping to see other families take on the Challenge…”

-Genevieve C.

PMSF | Phelan-McDermid Syndrome Foundation