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* Quick Links: Recent Events, Upcoming Events
Fiscal Year
In the Summer 2007 newsletter, Marianne Clancy, Executive Director of the HHT Foundation, stated, “The HHT Foundation is at a crossroads. We are positioned to make major strides but to be successful in keeping the momentum going YOUR FOUNDATION NEEDS YOUR HELP.
For the Fiscal Year ending
What is Grassroots fundraising? It is taking a fundraising initiative to the base level – your hometown community. What better place to start educating about HHT and raising money than your own community of family, friends, schools, and physicians. People are more inclined to give to a cause that doesn’t affect them directly when the cause is connected to someone they know. A large number of small, grassroots events can have more impact than one large event. However, grassroots fundraising can grow into something larger over time.
Based on this years’ budget, the Foundation is CHALLENGING our membership of over 2000 people to raise a combined total of $100,000 through GRASSROOTS FUNDRAISING.
Our HHT Members and Board of Directors have already started planning events, but we have along way to go if we are to be successful in reaching our goal. Please join us in raising funds for HHT. These funds can come from individual HHT members’ fundraising events or the combined group effort of the seven Regional Networking Alliances. Our own Board of Directors, composed of 14 members, has committed to raising a similar amount for the Foundation.
Fundraising Goals & YTD Results: (
Membership Grassroot – 18% Goal Attainment
Goal $100,000
Year To Date Actual $ 17,889 (Fighting for a Cure Dinner and Dance, Summer Write-On Campaign, Golf Tournament in Memory of Sandra Greco)
Board of Directors Fundraising – 13% Goal Attainment
Goal $110,000
YTD Actual $ 14,261 (Berkman Golf Event,
There are so many different ways you can help. Please call the HHT office if you need additional information or would like help planning an event.
Current Fundraising Events and Programs - How You Can Participate:
November/December 2007
The holiday season is approaching and there is no better time for giving. In the spirit of this season, The HHT Foundation wishes to invite you to participate in the
Letter-writing campaigns are an easy, fun, and rewarding way to raise funds and awareness about HHT. (Please read Sara Palmer’s inspiring Summer 2007 Write On experience by clicking on link in left panel) Your participation will assist the Foundation in:
- funding research to find better treatments
- educating families and physicians about HHT
- providing family support services
- raising awareness for HHT
Three members participated in the Summer 2007 HHT Write On Campaign. Those members received 73 responses which totaled $6,800. If three people can raise $6,800, (an average of $2,300 per person) can you IMAGINE what would happen if more people participated? Let’s do the math:
20 participants - $46,000
50 participants - $115,000
100 participants - $230,000
JUST IMAGINE HOW FAR THESE FUNDS WOULD GO TOWARDS MEETING OUR HHT
http://www.hht.org/docs/HHT_Accomplishments_07.doc
With over 2000 members, we believe these results are possible. To participate, all you have to do is write a letter and send it to your friends, family members, business contacts, etc. People who know your situation with HHT want to do something to help but don’t know what they can do. This campaign gives friends and family, as well as acquaintances, the opportunity to do something to help out.
Please click on the link for the Letter-Writing Campaign Guide. This guide provides all the instructions you need as well as a sample letters that you can customize.
http://www.hht.org/docs/How_To_Letter_Writing_Campaign_07.doc
http://www.hht.org/docs/Sample_Holiday_Letter.pdf
We hope you will consider participating in the Holiday Write-On Campaign so that the HHT Foundation can continue its momentum. If you have any questions or need more information, please feel free to call me at 1-800-448-6389 or email me at sharon.williams@hht.org.
Ongoing Fundraising Events
We introduced you to an internet search engine in the Summer Newsletter, www.goodsearch.com – powered by Yahoo, that donates 50% of its revenues to charities designated by its users. The HHT Foundation asked you to set this website as your internet default home page, to ask friends and family to do the same, and to watch the money grow. Many of you answered our call and look what happened . . .
May 45 hits- 1 member on her own
June 51 hits- 1 member on her own
July 70 hits- 1 member and 1 staff testing the site
Aug 193 hits- Foundation Office starts to use the site (3 staff)
Sep 479 hits- Foundation Office staff starts to use a home too
Oct 1168 hits- Newsletter received, members start to use site
Jan 2008- 1888 hits!
IMAGINE what would happen if ALL HHT FOUNDATION MEMBERS (and their family/friends) set their internet default home page to www.goodsearch.com!
Shop the NET
GoodSearch just sweetened the deal for designated charities. Now, you can shop through the GoodSearch at stores like Amazon, Best Buy, Gap, Home Depot, Target, ebay, itunes, and many more. Each online store designates a portion of the sale, ranging from .5% to 37.5%, to your charity of choice. It’s that easy! IMAGINE how quickly our donations will grow.
Start using GoodSearch today – there’s no reason not to!
GoodSearch.com
Earn money for HHT by doing something we do every day – searching the internet. GoodSearch is a search engine powered by Yahoo that donates 50% of its revenues to the charities and schools designated by its users. Please spread the word to your friends and family and ask them to put www.GoodSearch.com as their home page default or in their website favorites list. The more people use GoodSearch, the more money will be directed toward our cause. The sky is the limit!
Shop at IGIVE.COM
Shop online via this charitable website and a percentage of each purchase can be forwarded to the Foundation. There’s a link to iGive.com on our website at www.hht.org or simply go to www.igive.com.
Purchase Greeting Cards at www.morethancards.com
A percentage of the price of each card purchased is donated to the Foundation. Just click on the HHT logo under “Our Supported Foundations” and you’re on your way.
Your Wheels Can Work Wonders . . .
Donate Your Car, Motorcycle, Boat, RV, Camper trailer, or other motor vehicle….
Donating your used motor vehicle, whether or not is working properly, to Charity Motors will assist low income individuals with transportation needs while raising money for the HHT Foundation. Charity Motors guarantees that 70% of the vehicles selling price will be forwarded to all designated charities. In August, the HHT Foundation received its first contribution from a member through Charity Motors.
Charity Motors is a 501(c)(3) non-profit organization that specializes in soliciting, receiving, and selling donated vehicles. When you donate your vehicle to Charity Motors, not only is your donation tax deductible if you itemize, but you can also choose any non-profit organization to receive the proceeds from the sale of your car. When you designate a charity (i.e., the HHT Foundation), Charity Motors guarantees 70% of the proceeds will be given to that charity. This is the highest rate of return of any car donation program.
Benefits of Donating Your Car to Charity Motors
- Charity Motors will pick up your vehicle for FREE
- Charity Motors accepts car, motorcycles, boats, RV’s, camper trailers (running or not), and in some cases they will accept real estate.
- Charity Motors has a dealer’s license, therefore, they are able to transfer the title out of the donor’s name in accordance with state law.
- 70% of the proceeds are given to your charity of choice, the HHT Foundation!
- Visit their website at www.charitymotors.org for more information.
How Do I Donate My Car?
You need to call Charity Motors at (313) 255-1000. They have offices in
Call Charity Motors . . .
Eliminate the hassle of selling a car and Raise money for the HHT Foundation
Upcoming Fundraising Events – Please join us!
West Coast CHALLENGES the East Coast
Debra has given our HHT Foundation office, and all members on the East Coast, a challenge.
Our office is located in
We need to get the East Coast organized since the West Coast already has one year of experience. Deb will be happy to even the playing field and help get us started. I need individuals that are interested in supporting this effort on the East Coast. You do not have to run in the event to help. Please contact me at the Foundation office (800-448-6389) or email me at sharon.williams@hht.org, if you are interested in helping.
Recent HHT Fundraising Events
Golf Tournament in Memory of Sandra Greco
Sandra Greco of
Gloria stated, “It was as if
At the event, they held a Chinese auction and raffle to raise money for HHT in memory of
What a wonderful way to honor their friend.
Debra Drysdale, Family, and Friends run for HHT
Debra Drysdale, Secretary of the HHT Board of Directors, was fundraising again for HHT. Debra, and a team of friends, family, and co-workers ran in the Long Beach Marathon consists of a marathon race and a 5K race/walk. This event raised over $11,000 for HHT. That’s incredible! This was the first year that the HHT Foundation participated as an official charity in this event and we owe thanks to Debra for that.
“Our mission is to find a cure,” said Drysdale, who lives in
“Every effort counts,” said Drysdale who started helping publicize the condition after her diagnosis seven years ago. “We all need to continue to give back.”
It was an incredible experience for Debra and the whole Drysdale family. They helped raise funds for HHT, built public awareness for this disorder, and had a great time.
Debra stated that one of the more personally rewarding aspects of this event was the camaraderie that was formed by all the participants. That sentiment was particularly true for 4 of the participants that she had never meet before – all from her community and all with HHT. They had just stepped forward as a result of her requests for help with this event.
On behalf of Debra, the HHT Foundation wants to recognize and thank all of the individuals that helped raise funds to support HHT whether they walked, ran, or biked in the event, donated to individuals participating in the event, or set up their own fundraising site on Active.com to raise more funds for Deb’s event.
Fundraisers for the Long Beach Marathon include:
Wes Biggerstaff
Harry Bosk
Corie Bowden
Sasha Bowden
John Chen
Marianne Clancy
Debra Drysdale
Don Drysdale
Michele Drysdale
Nick Frank
Kundan Ghimire
Michael Girgis
Jill Ibbotson
Kathy Lee
Carol Lightner
Rick Lustig
Sonia Mehta
Robin Moore
Denise Ortiz
Martha Perez
Beth Plahn
Candice Tapley
Roselle Virtucio
Marissa Wang
Darrick Woo
If you are interested in learning more about raising funds through a marathon in your area, the HHT Foundation is happy to support you. Debra has learned the in’s and out’s of running this type of event and is also happy to speak with you. There are incredible web-based software programs that make it easy to manage these events and for others to join in and support.
Fighting for a Cure Fundraiser Dinner and Dance
Clayton and Jodie Nissan
Clayton and Jodie Nissan first thought of hosting a fundraising event after attending their first HHT Family and Patient Conference in
Clay and Jodie took all three of their children to the Mayo clinic in November and the oldest was diagnosed with HHT. Jodie explains, “This was very devastating for us, and especially Clay. Holding the fundraising event was a great way for us to feel like we can raise money to hopefully find a cure and prevent another tragedy in our family as well as other families with HHT.” Jodie further explains. “As a spouse and mother of somebody with HHT, I often feel so helpless. Planning the benefit was a great way for me to feel like I could do something and make a difference.”
The event was a true success on so many levels! The Nissan’s provided a fun-filled night of delicious food, music with plenty of good dancing tunes to get everyone out on the floor, a 50/50 raffle, and prize raffles. Everyone had a fantastic time, as you can see in the pictures, and at the same time $7,800 was raised for HHT!
Jodie states, “Although treatment has come a long way, we are still realistic that tragic outcomes can still happen and will continue until a cure is found. I am a very determined person when I feel strongly about something. I feel more passionate about this cause than anything in my life. Watching my husband and child suffer from this is very painful at times. Instead of letting these negative thoughts lead our life, I would rather continue to raise funds and hope for a cure.”
The amount of support the Nissan’s received from their friends and family was beyond anything they could have expected. The Nissan’s exclaim, “We truly thank everyone for their support and help. We would not have been able to do this without your help. We would encourage anybody to have this type of event. It was a lot of work but the feeling of success was incredible once the night arrived.”
The Clayton’s are on a mission to grow this benefit by leaps and bounds each year. They are already starting to plan next year’s event. Jodie and Clayton are incredibly giving people and on behalf of the HHT Foundation, and all those that are affected by this disorder, WE THANK YOU!
Summer 2007 HHT Write-On Campaign
In the spring, the HHT Foundation asked our membership to participate in an HHT Awareness Letter Writing Campaign that would take place over the summer. This type of Write-On Campaign is designed to help the Foundation raise money to invest in research and education while raising public awareness for HHT.
The HHT Foundation is so grateful to the individuals that supported the Foundation by participating in the Summer Write-On Campaign. We want to acknowledge and thank the participants:
Cassie Hamilton, TN
Kathy Beckwith, CO
Sara Palmer, MD
Collectively, Cassie, Kathy and Sara received 73 responses which totaled $6,800 in funds for HHT. Sara mentioned to me on the phone one day that, “it was like Christmas opening the mailbox each day and seeing all the responses”.
If three people can raise $6,800, that’s an average of $2,300 per person, can you IMAGINE what would happen if more people participated? Let’s do the math:
20 participants - $46,000
50 participants - $115,000
100 participants – $230,000
JUST IMAGINE HOW FAR THESE FUNDS WOULD GO. I believe these results are possible. We just need more people to IMAGINE the possibilities of what this funding can do for all those affected by HHT and then choose to be part of the answer through participation. We hope you will consider participating in a holiday Write-On Campaign or any other fundraising event that might be better suited to you. There are so many ways to raise funds and awareness for HHT.
……………………………………………………………………………………………
Sara Palmer’s Write-On Experience
I was motivated to participate in the Write on campaign because my mother, my son and I have HHT and have benefited so much from the education and services we found through the Foundation. We are fortunate that we were screened appropriately, and have thus far avoided any disabling events related to HHT. We also have some chronic symptoms of HHT (bleeding, anemia) that remind us daily of the need for more research and improved treatments.
I was also very excited by the number of people who responded to my HHT letters. I learned again that “ask and you shall receive” really works! My extended family members were more generous in their giving than I had anticipated. Many who live far away sent little notes of support and affection with their donations, which let me know that they care about and appreciate me.
In addition to raising money for HHT, my letters had an educational impact. Many people, even those I had already talked with about HHT, commented how much they learned from the letter and fact sheet, and that this gave them a better understanding of how my family has been affected by HHT and why more research is needed to help others. My aunt’s neighbor (who I have never met) was visiting her when she opened my letter–and the neighbor was so impressed by the information that she sent her own donation along with my aunt’s! Overall, this was a very positive experience; money was raised, information was exchanged, and everyone seemed to feel good about being part of it. The amount of time and energy expended was minimal, and was well worth the response!
Why is Fundraising Important?
Every day two children will be born with HHT. It is estimated that only 10% of people with HHT have been identified. Our mission is to find the other 90% and make sure proper diagnosis and screening is available to them and their families, so tragedies like those experienced by HHT families currently and in the past can be prevented.
As more people are diagnosed with HHT, they look to the Foundation for help. We believe it is the Foundation’s responsibility to respond to requests by providing support, education, and referral resources to anyone who asks. To continue to do so, we need your help. This appeal is important to all of us who care about this disorder. We may not be able to change our genetics, but we can make a difference in how HHT affects us.
What your Fundraising has helped HHT Achieve
As the only organization in the world that solely advocates for families with HHT, the Foundation has made great strides in the last several years with your grassroots fundraising support. Please click on the link to view some of these accomplishments.
http://www.hht.org/docs/HHT_Accomplishments_07.doc
Research Priorities that Your Continued Fundraising Support will help HHT Achieve
Our goal remains clear: to find a cure in our lifetime. Achieving this goal requires three basic resources; time, money and creativity. Click on the following link to see the HHT Research Priorities that your fundraising support will help us achieve.
Research Priorities
Fundraising Event (previous Fiscal Year)
A little bit of
We at the Foundation want to thank Deb, Don and all their family and friends who lent their support. No doubt this is not the first or last time you will be reading about Deb in our Direct Connection newsletter. She is one incredible person!
Deb Drysdale with some of her guests.
Deb Drysdale and her family enjoying the HHT Academy Awards Night
Fundraiser with a “special guest” who is celebrating his 100th birthday
this year. (l-r) Deb, her daughter Corie (who also has HHT), her
step-daughter Sasha, Don, and the Duke
WINE TASTING & SILENT AUCTION FUNDRAISER
Julie Jasinski, of
The event was a huge success. Under the Grape was a great venue for the event. The food was spectacular, everyone enjoyed the wine tasting, and the silent auction was a lot of fun. Julie commented, “I was just overwhelmed by the generosity of all the people and businesses that donated items or services to the silent auction.”. Some of the silent auction items were: a vacation get-away at
A special thanks go to the generous sponsors which included:
Gold Sponsor: Mattei Casey Foundation
Silver Sponsors:
Corporate Sponsors:
This grassroots fundraising event brought in over $13,200 in donations for the Foundation! The Foundation is so fortunate to have Julie and her family involved with this organization. Thank you Julie for your spectacular contribution.
5TH ANNUAL BASS OPEN GOLF TOURNAMENT
April 2007
On
(l-r)
“If you had told me five years ago we’d still be doing this and raising more money each year, I’d have told you that you were crazy. That’s exactly what has happened”, stated Lisa.
In their fifth year, Lisa raised the most money ever with a total of 53 donors and over $7,900 for HHT. Lisa commented, “sponsors and golfers come from three states to spend the day with us. They golf, eat, drink and win prizes. It’s a great day for everyone involved!�”
It’s gotten to the point where people approach the Bass’s now about the tournament. As soon as the holidays end in January, they start getting inquiries from past participants. And what begins as a long, daunting process begins to take shape.
Lisa commented, “The generosity of the participants, sponsors, and volunteers never fails to astound us. People truly want to help, all we have to do is ask.”
The Bass family look forward to seeing all the familiar faces again next year as well as some new ones at the 6th Annual Bass Open Golf Tournament. The date is
Once again the Foundation extends our sincere and heartfelt appreciation to Lisa and Sean and the rest of their family who have so consistently contributed to the HHT Foundation.
Sean and Lisa Bass announcing the winners (and losers) and giving out prizes.
(l-r) Lisa Pennell, Kym Byrnes, Lisa Bass and Megan Brown. Lisa’s three right-hand women who helped pull off this big event.
