International Rett Syndrome Foundation (IRSF)

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"Getting involved with fundraising was the most therapeutic thing we did as parents when we received our daughter’s diagnosis—we felt good knowing we had control over something related to Rett syndrome." ~ Jennifer, MA

Receiving the diagnosis of Rett syndrome is not easy. Often times it is a difficult period, until everyone adjusts to life and decisions are made about how to proceed. Everyone is different and will cope in various ways…some will decide getting involved is the best route to take. Planning an event and fundraising are two of the most proactive avenues one can venture down. They can be time consuming and hard work, but promise to be rewarding and help to bring comfort and healing. Contact the understanding, helpful and supportive staff today at the International Rett Syndrome Foundation. We are here to help you take action!

Fundraising has become a large part in the lives of many Rett families. Raising crucial research dollars on behalf of your daughter can serve as a way to "heal" and every dollar raised brings us one step closer to the cure we seek. CLICK HERE to read testimonials of IRSF parents that host events and fundraisers in their community. Now more than ever we need the support of the Rett community - now is your chance to make a difference not only in your child’s life but in the lives of all those across the country suffering from Rett syndrome.

Host an Event
IRSF offers many tools to help make your fundraising efforts as seamless and successful as possible. We can take care of the design of materials and the advertisement and promotion of your event within the Rett syndrome community. We can also handle the financial end of things like keeping track of donations and helping you budget. The IRSF Fundraising team is always available to help brainstorm and come up with the best plan of action to turn your ideas into reality!

If you are interested in hosting or helping to plan an event on behalf of IRSF please browse through each fundraising program listed below to find the one that best fits you. OR pick a unique idea from our A-Z Fundraising Ideas List! Please feel free to contact the IRSF office at 1800-818-7388 at any time if you have questions or for more information.

Download the EVENT STARTER KIT here which includes checklists that are easy to follow which will help get you started! Remember: Any activity can be turned into a fundraising event!

+The IRSF Strollathon Program

The Strollathon is the signature event of the International Rett Syndrome Foundation. It is a fun-filled family event which raises crucial research dollars and public awareness of Rett syndrome (RTT) in communities across the country and even worldwide. The hard work and dedication of families country-wide has helped IRSF to substantially increase the dollars raised and add more Strollathons to the calendar each year to help further our mission. In 2004, we helped Rett families host four Strollathons and in 2005 that number doubled to eight! In just two years, from 2004-2006, the Strollathon program went from raising $465,000 to $815,000! A record 20 Strollathons took place in 2010 and raised an astounding $1.1 million! The program has grown tremendously since the Inaugural event in 2002 and has raised nearly $6 million for RTT research, family support and advocacy. The Strollathon program is the heart of the IRSF fundraising program.

How can IRSF help?

+Materials Available to you (PDF links)

Sample letters

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Link to Calendar of Events

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+IRSF Galas, Dinners and Auctions

Each year IRSF volunteers and families plan about 4 large Galas across the country and many smaller Galas. In 2010 IRSF Galas raised over $1 Million for Rett syndrome research and program services! Large Galas usually consist of a live and silent auction and either a sit down dinner or heavy hors d’oeuvres and cocktails. A smaller Gala can consist of both a silent and live auctions or but most only have a silent auction and a small raffle. Galas do not have to be fancy! They can be a backyard barbeque or a party at your local VFW or dance hall! IRSF has many logos and themes already created for you to choose from – or create your own! Many of the themes available can be used however fits best within your community. Below are some examples to choose from.

Examples of Large Galas
- In Boston, MA the Boston Festival of Food and Wine has raised over $5 Million for IRSF in just 10 years. This amazing event showcases some of Boston’s most famous restaurants and chefs. Guests enjoy tastings from all over Boston, cocktails and a large silent and live auction.
- In Louisiana, the Baton Rouge Spending Time Ending Rett Gala raised close to $200,000 and featured a live and silent auction. Guests also participated in a fun iPad raffle and good southern cooking!

Examples of Small Galas
- In a small town in West Virginia, a Rett family invited their friends, family and coworkers to a small ballroom in a hotel to host a HER Night event for IRSF. Guests enjoyed a small silent auction and a sit down dinner catered by the hotel.
- A family in Ohio hosted a small gala with a Black and White attire theme at their home. They charged a fee at the door to cover some costs. Guests enjoyed a pot luck meal and a 50/50 raffle while mingling with friends and family.

+Materials Available to you (PDF links)

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Link to Calendar of Events

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+IRSF Golf Tournaments

Just like Gala events, IRSF Golf Tournaments can be either large or small events depending on your community and budget. IRSF helps volunteers plan about 3 large Golf tournaments each year and about 5-8 smaller Golf tournaments as well. Golf events are great for the business crowd – if you have connections in a professional community a Golf tournament may be the right event for you!

How can IRSF help? (PDF link)

+Materials Available to you (PDF links)

Manual
Sample logo
Sample letters

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Link to Calendar of Events

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+IRSF Miscellaneous Events

If you have another idea for an event, chances are it has already been done for IRSF so no need to reinvent the wheel! IRSF has helped Rett families and volunteers plan numerous miscellaneous events ranging from Bike Rides to Lemonade Stands – Happy Hours to Costume Parties! If you have a new and unique idea for an event, don’t be afraid to share it with the IRSF staff – we have many tools to help make your idea a reality.

How can IRSF help? (PDF link)

+Materials Available to you (PDF links)

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Link to Calendar of Events

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+IRSF Phantom Tea and Care & Cure Café

For over 15 years, the foundation has sponsored the popular Phantom Tea fundraiser during October Awareness Month. In 2009 IRSF re-created the look and feel of the Phantom Tea materials and introduced the Care and Cure Café as an online alternative to the direct-mail Phantom Tea. The Café is open year round, so drop in and create your very own fundraising page at www.firstgiving.com/irsfcareandcure.

Order Form (PDF link)

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Below are logos and themes readily available for you to use. Most of which, are IRSF Signature events such as the Strollathon, HER Night and Spending Time Ending Rett!