November 2022 Volume 33, Issue 11
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BDSRA Foundation Welcomes Noah Siedman!
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BDSRA Foundation is excited to welcome Noah Siedman to the team. Noah will serve as the staff’s new Database Manager, where he’ll be responsible for collecting, tracking, and maintaining incoming grants, donations, and registration information.
Noah grew up in Massachusetts and has been a part of the rare disease world for most of his life in support of his brother, Ben, who was diagnosed with a genetic disorder when Noah was four. Noah graduated from Franklin and Marshall College in 2016 with a degree in Spanish Language and International Politics. In his spare time, Noah likes to cook, play chess and soccer as well as practice/learn languages (Arabic and Spanish so far).
“I can’t wait to bring my experience and passion to BDSRA and keep working to build this amazing community!” – Noah Siedman, BDSRA Database Manger
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Giving at Year-End Helps BDSRA and You
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‘Tis the season of giving, and BDSRA is thankful for the many gifts we have received this year. We know the economy has been challenging, and we too are feeling its effects. The Annual Appeal, in combination with 4th quarter giving, make up over one-third of our annual budget. The good news is that there are many ways in which you and those you love can give to BDSRA to support our vision of a World Without Batten.
One great way to support BDSRA is to make a qualified charitable distribution from an IRA*. Many in our Batten community have reached the age for which they must take a distribution from their IRA. This is a great way to ask grandparents, great aunts and uncles, or others over the age of 70 1/2 in your family if they have donation plans for their IRA distribution. A single contributor can rollover up to $100,000, and married couples may distribute up to $200,000. BDSRA is an acceptable recipient of distributions in any amount, and if the rollover comes directly to us, there is a tax benefit as well. This is a great way to advocate for a cure.
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Another option that reflects value in the mission of BDSRA is the donation of stock. This is one of the most effective tax-smart strategies for achieving maximum charitable impact. By donating appreciated non-cash assets held more than one year, donors who use this strategy can generally eliminate the capital gains tax they would otherwise incur if they sold the assets first and then donated the proceeds. Gifts can be made to BDSRA by transferring them directly to our investment account. Gifts of bonds which require a “holding” period will be accepted and cashed when the holding period is over.
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Bereaved Batten parents Warren and Brenda Pfohl donated a stock gift to BDSRA in 2021.
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Marketable securities may also offer tax benefits to the donor.*
Donor Advised Funds are a vehicle that helps donors streamline their charitable giving. By putting donations in one charitable giving arm, donors then make grant suggestions for BDSRA to the manager of those funds. This benefits BDSRA, and the donor needs only to track of the initial gift to the Donor Advised Fund for tax purposes.*
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BDSRA is relying on year-end giving to meet our annual budget goal, and we need your help. We hope to inspire creative ways in which you can talk about giving or make plans for your own charitable year-end goals. If you or someone you know wants to express their investment in the BDSRA mission, but you need more information, I invite you to reach out to me or one of our board members for help. A World Without Batten takes the efforts of us all.
*Donors should always consult their tax advisors for information on their charitable giving plans.
-Amy Fenton Parker, BDSRA Foundation President & CEO
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BDSRA NY/NJ Chapter hosts 20th Annual Bowl-A-Thon
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The 20th Annual Batten Disease Bowl-A-Thon in Staten Island, New York was held in-person for the first time since 2019. BDSRA President & CEO Amy Fenton-Parker shares her thoughts and takeaways from the event.
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My biggest takeaway from the Bowl-A-Thon was that the Batten children, who attended for many of the 20 years, were no longer there for the first time. A large sign was created with their pictures and names, and I was honored to recite each of them before the event began. It is not lost on me that they are the truest advocates of the disease and living or not, they speak to those who love them and those they may have never met. This is what drives our mission.
It was an honor to meet and thank the organizers and attendees of this longstanding fundraising event for the NY/NJ Chapter of BDSRA. The families who attended, the lane sponsors, the gift basket donors, Rab’s Country Lanes, the New York State Society of CPA’s–Staten Island Chapter, and the CPA firm of Cicero, LoVerde & Pacifico, most especially Gerard LoVerde, were connected to Batten out of love and drive for a cure for the children and their families they hold so dear. It was wonderful to see Batten parents there and meet some of them for the first time.
I learned that there was a long-standing registry held by a parent who attended and that we may be able to secure it! This is exciting on so many levels for research and trials. It will need updating for the recent three or so years, but I believe with our community’s help we can fill in the gaps.
Listening and learning from everyone who attended about their Batten connections and why they have come year after year inspires me to remain laser-focused on our team’s work toward the mission. Seeing the faces of the children remembered reminds me daily of our mission to provide support to the community, to advocate for them, and to fund and facilitate research for treatments and cures.
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BDSRA receives gift from Wilmette Park Lodge 931 for Research
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BDSRA Foundation is grateful to receive a generous gift from Wilmette Park Lodge 931 in Illinois! David Kurtz, a bereaved Batten parent to Addison, presented the donation to BDSRA President & CEO Amy Fenton Parker prior to November’s NCL Translational Research Conference in Chicago.
BDSRA would like to thank David and Wilmette Park Lodge 931 for their generosity and consideration for the Batten community and BDSRA!
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BDSRA Foundation Board Member Spotlight | Fred Surrey
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The November Board Member Spotlight features Treasurer Fred Surrey.
In this write-up, Fred details his Batten journey alongside his wife, Janet, and two late Batten-affected daughters, Michele and Lauren.
Fred also discusses the impact BDSRA Foundation has had on his family and how he became more involved in the Batten community.
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Interested in Sharing Your Story?
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The BDSRA Foundation is committed to supporting and advocating for those affected by Batten disease to raise awareness and give this community a platform to share their stories.
Sharing your story allows BDSRA to help raise awareness for Batten disease and advocate for improvements and developments for our three pillars — Support, Research, and Advocacy.
Please contact BDSRA Foundation Marketing & PR Coordinator Patrick Kotnik at patrick@bdsrafoundation.org if you’re interested in sharing your story with BDSRA.
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Do You Follow BDSRA on Social Media?
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Want to see more BDSRA content? Don’t miss out on upcoming events, information, campaigns, and community posts! Follow @BDSRA on Facebook, Instagram, LinkedIn, and Twitter to stay in the know on all things happening in our Batten Community!
Click below to follow all of our accounts:
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BDSRA will host a virtual Holiday Grief Chat on in December.
A date, time, and registration information will be available soon. Follow our social media and website for updates!
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BDSRA attends NCL Translational Research Conference in Chicago
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BDSRA President & CEO Amy Fenton Parker and Marketing & PR Coordinator Patrick Kotnik attended the Translational Research Conference for the Management of NCLs in Chicago early November.
Read Amy’s summary and takeaways from the conference below!
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The conference was beneficial in so many ways, but my biggest takeaways were collaboration and hope. There are several researchers and clinicians working in the Batten space, and quite a few new researchers wondering how their work might benefit our Batten patients.
It was exciting to watch researchers presenting live and then discussing how their work might also intersect with another’s who had presented. I also got to listen to those who are now embarking on their studies since labs are opening again and ask for input on their plans. I got to meet two of our 2019 research grant recipients, Heather Adams, who will soon begin her study, and Elena Batrakova, who presented her findings on “Novel Nanoformulation of TPP1 for Treatment of LINCL Batten Disease”. In addition to the researchers, industry partners, clinicians, families, and our international partners attended to better work together in the effort to find treatments and cures, and this gave me great hope.
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Dr. Heather Adams, University of Rochester
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Dr. Elena Batrakova, University of North Carolina at Chapel Hill
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This conference was born out of our families’ efforts to push research through collaboration. They hoped to accelerate work by bringing researchers and clinicians together in a manageable size to facilitate presentations and discussions around Batten disease. This was the seventh year of the conference, which is held only every two years, and it is exclusively for work in Batten disease.
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I am always learning, so with every conference I attend, I am grateful for our community who helps to send me to them. This conference allowed me to meet researchers I hadn’t yet met, to have meaningful conversations with many who attended, and to have side meetings with our international partners and many others. I learned that there are many different studies happening in large animal models, as well as needs for quality of life. The concern for the patient is always at the forefront of the conversations, and it was refreshing to hear it.
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BDFA Chief Executive Amanda Mortensen (left) and BDSRA President & CEO Amy Fenton Parker (right) were among the participants in the International Partners meeting.
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Dr. David Pearce, a member of the BDSRA Board of Directors and Science and Research Committee, was among the participants in the Batten Centers of Excellence Meeting.
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We were able to capitalize on this trip in so many ways, and this allowed us to focus on our mission and key elements of the strategic plan. We worked with our international partners to create four areas of focus in collaboration; we brought together board members and clinicians to discuss Batten Centers of Excellence; and we talked with family foundation members who are interested in supporting our families in many different ways–in addition to research needs with BDSRA.
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Everyone at the conference shared in the Vision of a World without Batten, and that collaboration motivates our team to continue to advocate for a cure with every conversation.
-Amy Fenton Parker, BDSRA Foundation President & CEO
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WATCH | NCL Translational Research Conference Summary
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Watch as BDSRA Foundation President & CEO Amy Fenton Parker summarizes her experience at the NCL Translational Research Conference in Chicago and the impact it has on BDSRA.
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Research Updates from Industry Partners
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No update available at this time.
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No update available at this time.
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No update available at this time.
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No update available at this time.
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No update available at this time.
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November 2022 Facebook Fundraiser Spotlight:
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We are so excited each day to log in and see the list of your names growing. Thank you for sharing and supporting our mission on social media! You can visit each fundraiser by clicking on the names above. Thank you!
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In Loving Memory
Remember with us those we have lost to Batten disease. It’s in their honor and memory that we work every day to build a brighter future for families.
To have your loved one’s name placed in The Illuminator please email info@bdsrafoundation.org.
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Thank You BDSRA Community of Donors!
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Thank you for investing in our mission. We exist to provide support, research, and advocacy for families with all forms of Batten Disease. We want to acknowledge the donors who gave so generously last month to our work. Together, We are Batten Advocates for a Cure.
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To view the list of recent donors, please click the button below!
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Your gift makes all the difference in the lives of families.
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Batten Disease Support and Research Association
(614) 973-6013 | info@bdsra.org | www.bdsra.org
View Message Online Link
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