My Story: “It’s Rewarding to Help Others”

turner syndrome advocate
A Turner Syndrome Advocacy Volunteer Shares Her Story

My name is Kym and I was diagnosed with Turner Syndrome at 16 years old. I was born the youngest of six with my twin brother in 1971. Growing up I showed some signs of Turner Syndrome, but doctors never put it together. I was always the shortest in my class, had a webbed neck, and experienced hearing problems.

At 16, my mom was concerned about my growth and puberty. I had a DNA test, which finally confirmed my Turner Syndrome. It was scary at first not understanding Turner Syndrome and being a teenager. Luckily, I learned quickly not to let it stop me. Meeting others with Turner Syndrome helped me as well. I went to college got my BA and Masters in Counseling.

I am currently a retired teacher and a volunteer advocate for the Turner Syndrome Foundation in my home state of New Jersey. We were instrumental in getting a bill passed that made February Turner Syndrome Awareness Month in New Jersey. I phoned, emailed, and even testified in front of the NJ Senate. Currently, I volunteer by talking with others about Turner Syndrome for the TSF.

I want every Turner Syndrome baby to have the advantages I didn’t have due to my late diagnosis. I have a passion for awareness and hope to help girls receive a much earlier detection. It is rewarding to help others.

Like Kym, you can be the change and influence the future of Turner Syndrome care. The easiest way to get involved is by making a donation today. Your support allows TSF to continue offering support and resources to volunteers like Kym who are dedicated to making a difference.

Benefits of Stock Contributions in 2018

Stock contributions

Giving Stock, Bonds, or ETF Shares To Turner Syndrome Foundation is a smart way to increase your gift – and your tax deduction. When you donate appreciated stock shares that you have owned for at least one year to Turner Syndrome Foundation, you will:

  • Receive full fair market value for your tax receipts
  • Bypass federal capital gains (you will be required to pay capital gains if you sell your stock prior to donating).
  • Make a meaningful gift to Turner Syndrome Foundation to ensure all girls and women with Turner Syndrome receive the care they deserve.
Here’s how it works:

Lets say you bought $500 worth of stock several years ago and that stock is now worth $1,000. You could sell the stock for $1000 and send a check to TSF for $1,000. (Thank you!) When tax time comes around, you will have a charitable deduction of $1,000 but have to pay capital gains tax on the $500 gain. At 20% this would be $100. If, however, you donate the stock directly to TSF, the IRS still gives you the charitable deduction of $1000 but there is no tax on the gain. So you saved $100 on your donation!

Stock contributions are even more powerful in 2018 under the new tax law. Federal tax benefits for paying state capital gains taxes have disappeared, meaning combined federal and state capital gains tax rates went up. Fortunately, by gifting appreciated assets you are able to bypass those capital gains taxes. To avoid all capital gains taxes, donors can do a “charitable swap” to maintain their portfolio after their gift. Instead of donating, give stock to TSF in the same value you would like to donate. Then use the cash you would have donated to replace the donated shares. With a “charitable swap,” you can avoid capital gains taxes completely while keeping your portfolio!

Give smart and from the heart by donating stock to Turner Syndrome Foundation today! Learn more at https://turnersyndromefoundation.org/become-supporter/stock-contributions/

Meet Doreen: Mother & Advocate

My husband Gary and I were married for 4 years, the proud parents of Paul, almost 2 years old, and pregnant with Olivia, when we received a call from our OBGYN with our amniocentesis test results. When I replied, “What is Turner syndrome?” our doctor said, “If I were in your shoes, I would consider terminating the pregnancy.”  Devastated, we proceeded to find out everything we could about Turner syndrome. Our choice was never to terminate, but we wanted to find out what was ahead for our child and why a doctor would say something like that. It turns out, our doctor didn’t even know herself what Turner syndrome was.

So many years later it still amazes me how little information is out there regarding a syndrome that affects 1 in 2000 females – and many more who are conceived but sadly do not survive. Only 2% of fetuses with Turner syndrome make it into this world. That statistic in really unbelievable to me, my family, and my now 16-year-old Olivia. It’s also unbelievable that although so many are affected by Turner syndrome, we still have to educate many doctors, educators, and the medical community about this condition.

Olivia, a 45X is the most amazing young lady. Yes, she has differences and struggles. Yes, she has a non-verbal learning disorder. Yes, she had heart surgery at 2 months old to repair the coarctation of her aorta. Yes, she has some hearing loss and wears a hearing aide in one ear. Yes, she is affected by Turner syndrome. And yes, she is simply AMAZING!

We truly believe God puts people in our paths for a season, reason or lifetime. My husband Gary and I met Laura Fasciano at a conference. We were blessed to do what we could to help launch the Foundation. Sadly, my husband, Olivia’s dad, became ill and passed away in 2014. He was Olivia’s biggest fan and also the Foundation’s. Gary is our Turner syndrome angel in the outfield. He knew the Foundation would reach great heights to help all women and girls affected by TS.

Without funds, it is impossible for the Foundation to keep going to make all of the struggles and differences TS girls face easier to live with. We need support for research, education and awareness. We need to keep fighting for these babies, girls, and women. They are our children, sisters, wives, moms and the strongest females on this planet! As my Olivia says, “Just remember the statistics: 1 in 2000 are affected and 98% don’t survive to make it into this world.” Please consider giving what you can.

Join Doreen and Olivia in bringing hope to this mission with a donation today.

The Power Within You

volunteer take action turner syndrome

What do historical figures have to do with the future of Turner Syndrome? They show us the power that one person and one organization can have. Jane Addams is a great example. Unsure of her own path in life, Jane noticed the poor living conditions in the industrial centers of 1889 Chicago and chose to make a change. She dedicated her life to nursing the sick, feeding the hungry, and educating the youth of Chicago. Her accomplishments eventually won her a Nobel Peace Prize and the position of President Herbert Hoover’s assistant.

Jane’s story represents the influence just one person can have in the world, but what if those individuals join together? Aldon Morris, an award-winning scholar, studied how the American Civil Rights Movement was so successful. He lists a number of reasons, such as media attention and economic consequences – but the main reason he calls the Civil Rights Movement “genius” is because of the sheer number of people that organized together over a common goal to make change happen.

These moments in history show the power we all have within us if we’re willing to stand up and take action. What power do you have within you? Are you a good writer, an excellent speaker? Are you well connected within your community?

Take a moment and think about how you can use these powers to raise awareness for Turner Syndrome. Writers: will you write to your legislators asking them to declare Awareness Month on a national scale? Those who are well connected: will you ask your colleagues and friends to help you support a cause that’s important to you? Those who love to entertain friends and family: will you plan a Turner Syndrome fundraiser?

At this time of year, you’re probably seeing a lot of requests from charities asking you to donate. But donating your time is equally important to us at TSF. Take a stand, get involved, find your voice – and one day you’ll look back at how much Turner Syndrome care has improved because of you.

Start today. Register below and select your interest in volunteering and a volunteer coordinator will reach out to you shortly.

Give Today for Her Tomorrow

legacy giving

Planned or legacy giving forms a charitable gift now that will go to the organization of your choice in the future. “Planned” gifts are unlike usual donations because you should consult a lawyer and financial planner when setting them up. You don’t need to worry. Although planned giving takes some thought and consideration, it isn’t complicated. After speaking with your lawyer and financial advisor, a planned gift will add just a few minutes and few sentences to your will.

Why Should I Consider Planned Giving?

When you designate a gift in your will to TSF, you are supporting Turner Syndrome awareness and research long into the future. Your thoughtful planning today leaves behind the promise for a better tomorrow for every baby born with Turner Syndrome. You’ll also gain tax benefits under state and federal law.

Turner Syndrome Foundation has created brochures detailing the various ways you can designate a planned gift. Visit https://turnersyndromefoundation.org/become-supporter/planned-giving/ to learn more.

 

 

Support for Grandparents

turner syndrome grandparents

Are you the grandparent of a girl or woman with Turner Syndrome? We want to thank you for being here, for seeking knowledge and understanding for your granddaughter.

Grandparents reach out to TSF just as frequently as parents. They’re often hoping to understand what their granddaughter is going through and looking for resources to help her. Grandparents also contact TSF for support for coping with a new diagnosis.

Today, we’re sharing tips specifically for grandparents on coping with a diagnosis. How can you get involved now while supporting you son or daughter who just received a diagnosis for their child? Keep reading to find out!

Tips for Coping with a New Diagnosis
  1. Give everyone time to grieve. Though TS girls can live long, healthy lives, the future you envisioned for her may be a little different. Be patient with your child, grandchild, and yourself as you all take time to accept the diagnosis.
  2. Ask how you can help. Your child may have a lot on their plate right now and can benefit from your support. If you’re struggling with something, don’t be afraid to ask for help, too.
  3. Listen. One of the best ways you can support your son or daughter is just by being there and listening. Visiting doctors, finding insurance help, and more can be overwhelming. By listening, you can help alleviate any negative feelings.
  4. Remain hopeful. Turner’s girls are amazing! They are limited only by their own dreams. Watch our video series to see what our girls are capable of.
  5. Don’t ask too many questions about the future yet. There may be some unknowns right now, and bringing them to your son or daughter’s attention may lead to more confusion. Visit the TSF website or reach out to us instead and we’ll help you find answers.

Turner Syndrome Foundation is happy to provide personalized support to each person that contacts our office free of charge. We know how important a listening ear or a reassuring voice can be at this challenging time of a new diagnosis. Your donation today can allow TSF to continue providing one-on-one support to those who need it most. 

An easy and fun way to get involved

Here is a way to make a difference in your community. Find a race near you and register, set-up your Team TSF fundraising page, get your family and friends involved, lace your shoes, and run your race! That simple.  Best part is… you don’t have to be an athlete, anyone can do it.

Don’t want to join a race but still want to DO SOMETHING? Raise funds online or host an event of your choice! No experience is not an excuse. We are here to help!

TEAM TSF Online Fundraising

Question? Email volunteer@tsfusa.org or call 732-847-3385

Join the Friends of TSF

One of the most impactful ways to support TSF is to become a monthly donor. Monthly donors are fondly called Friends of TSF because they help sustain TSF’s programs throughout the year. As a nonprofit organization, we depend on consistency so that we can continue to help those affected by Turner Syndrome.

Monthly donations are also beneficial to you. They allow you to spread your donation over a series of months, so you can plan and stay on budget. By joining Friends of TSF you will also receive hassle-free automatic monthly contributions, the ability to change or cancel your donation at any time, an annual statement for tax purposes, and the peace of mind that your donation is put to work immediately.

SUPPORT: $10/month can help provide personalized support to an individual or caregiver at any stage of life.

EDUCATE: $25/month can provide helpful education resources and advocacy programs when they are needed most.

RESEARCH: $50/month can support emerging research initiatives to impact women’s healthcare and save lives.

Become a monthly donor today and provide the steady resources to advance education, awareness, advocacy and research. If you are already an annual donor, upgrade to a monthly donor. You’ll join a dedicated group of people, Friends of TSF, who reach out each month to change the future of Turner Syndrome care.

Become a Monthly Donor:

Visit our online donation form and give as usual, being sure to select “Monthly” under recurring option. If your prefer to give by mail, download and print the Legacy Giving form and mail to:

Turner Syndrome Foundation
P.O. Box 726, Holmdel, NJ 07733

 

From Heartbroken to Hopeful

Kourtney’s Story

“My pregnancy with Natalie was my third pregnancy. After two fetal loses, the doctors were watching me closely and considered me high risk. We were terrified to get our hopes up that this pregnancy would be successful. At 10 weeks we had an ultrasound and they found a cystic hygroma on the baby’s neck. We were sent for CVS testing and received the results two weeks later.

We were told that our baby had non-mosaic TS, and that the combination of the TS and the hygroma gave her no chance of survival. The doctors recommended that I terminate the pregnancy due to my emotional state.

At 14 weeks we went in for a repeat ultrasound. The cystic hygroma shrunk significantly, and her chances of survival were raised to 0.5%. The pregnancy was difficult. I had low amniotic fluid throughout, so I could not feel any movement. We never knew if she was OK in there, but we hoped for a miracle.”

A Future of Hope

Kourtney is not the only mother who is heartbroken at the time of diagnosis. A lack of TS knowledge often leaves family members feeling confused and lost. This is where the Turner Syndrome Foundation comes in. Our mission to increase Turner Syndrome awareness and education can help mothers like Kourtney find hope in a troubling time. With your support, we can continue offering information free of charge, so family members can learn about Turner Syndrome in a safe, hopeful place.

Natalie is the most amazing, wonderful kid you could meet. There is not a person who meets her who does not love her on the spot.  She is incredibly smart, beautiful, and full of life. When she goes in for her bi-anual blood-work, she thanks the doctors and says, ‘See you soon.’  She knows each of her 10 doctors by name, and what they check her for. When Natalie enters a room, she immediately lights it up. My entire family is convinced that she was sent here to make us all smile and appreciate how wonderful life is.

Your support of the Turner Syndrome Foundation today will help parents and family members like Kourtney navigate a new diagnosis. Only you can bring hope to those who need it most.

Webinar: Power of Positivity

Register for a webinar, Star Sisters Unite Power of Positivity –

Presenter: Chrissy Timpson, 2018 Mrs. New Jersey

Presentation topic: The power of positivity
Topic is suitable for all ages

Event Info & Registration

X