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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

Donor Frequently Asked Questions

In the final months of the year, many charitable organizations begin reaching out for support to help power them through the coming year. Did you know there are more than 1.5 million nonprofit organizations registered in the United States? However, 54% of donors give to the same 20 organizations! We’re sharing some information below to show you why the Turner Syndrome Foundation is a good fit for you this year!

What is TSF’s mission?

The goal of the Turner Syndrome Foundation (TSF) is to support research initiatives and facilitate education programs that increase professional awareness and enhance medical care of those affected by Turner Syndrome. Early diagnosis and comprehensive treatments over the lifespan may lead to a brighter and healthier future for all young girls and women with Turner syndrome.

How do you fulfill your mission?

Each year, TSF partners with physicians, legislators, industry leaders and more to raise a greater awareness through education, research, and advocacy – all while providing one-on-one support to patients on demand.

How will you use my donation?

We currently have exciting projects in the works! For example, the Turner Syndrome Council on Cardiology commissioned by TSF is developing materials to educate physicians on cardiovascular health in Turner Syndrome care. Did you know more than 50% of TS women will have a heart defect, putting them at a great risk of early mortality? Your support will help change this.

What makes TSF unique?

We never charge anyone to access the wealth of information on our website. We believe these life-changing resources should be available to those who need it, when they need it. Other organizations can’t say that.

Where can I learn more?

You can learn more about TSF by visiting the About Us section of our website. You can also visit our GuideStar and GreatNonprofits pages to hear testimonies and learn more about our specific programs.

YOU Make the Cause!

Thanksgiving Greetings

Two simple words deserve repeating. Thank you! Thank you to all who give generously of themselves to empower the enduring mission of the Turner Syndrome Foundation. You are the selfless heroes who go above and beyond personal responsibilities to give back and make a difference in the lives of others. You make this mission a reality.

You support this cause meaningfully because you care. Gifts of support in all amounts contribute greatly. Whether you are a one-time donor, an annual donor or a major donor, equally you sacrifice to support this cause. Thank you. We are stronger with you. 

You, our volunteers, interns and staff are the engine of this mission. You develop and execute programs with core values to improve and save lives. Thank you. Your talent shapes the future of TS. 

Educators, clinicians and researchers dedicated to a greater understanding of Turner Syndrome enlighten the world and bring hope to the future of TS. It is because of you that we see progression in education and research initiatives. Thank you. Your contribution to these initiatives advance this cause.

We here at the Turner Syndrome Foundation are thankful for your kindness and generosity! With your support we lesson the suffering of people. Together, we thoughtfully tackle issues that would otherwise be ignored. Thank you. You are a gift to this cause. You make this mission thrive!

We invite you to view the Annual Report to learn more about the power and promise of this mission. Thank you. You help the people we serve. 

Autumn is a beautiful time of the year. During this season of reflection, we join together in thanks and gratitude for traditions that shape our lives. For those who seek comfort during this time of the year, we hold you close in our thoughts and send an embrace of support. Peace and blessings to all on this Thanksgiving.

Truly yours,

Laura Fasciano, Director & Founding President

Throw a “Spirit-of-Giving” Holiday Party

The holidays are a time when friends, family, coworkers, and more get together to celebrate! There are many reasons to host a holiday party – ugly sweater parties, Secret Santa soirees, and year-end office gatherings to name a few. You can turn any of your usual get-togethers into a Spirit-of-Giving holiday party just by adding a giving back component!

A giving back theme can liven up your usual party or start a new tradition in your neighborhood that your community will appreciate for years to come! Your party doesn’t need to be a fundraising gala or expensive rendezvous – unless you prefer that, of course! A Spirit-of-Giving party isn’t about the decorations; it’s about offering a chance for your guests to do good!

There are a few ways your holiday party can give back to TSF!

  1. Charge “admission” to your gathering by requesting a fixed amount
  2. Request on the invitation that guests make a donation
  3. Provide a space for guests to leave their holiday “gifts” in the form of a donation

Fun Ways to Encourage Your Guests to Give:

  1. Tell your story at the party, showing guests why this cause is so important to you
  2. Raffle off exciting items
  3. Give a special prize to the highest donor
  4. Share the amount you raised at the end of the party and celebrate it!

Giving back can be just as fun and festive as your usual party – and make it that much more special! So gather your community, support an important cause, and go into the New Year feeling amazing! Get started by completing the interest form below. 

 

 

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November is Caregivers Month

November is National Family Caregivers Month!

An entire month to celebrate the contribution of more than 44 million Americans who volunteer to care for a family member, friend, or loved one.  While caregivers can sometimes be overlooked, it’s important to show them just how appreciated they are. Join us in recognizing these amazing caregivers throughout November and beyond!

This year’s theme is “Supercharge Your Caregiving” – because even superheroes need tools! We’re sharing some tools below to help you manage it all and celebrate, too!

Caregiving Tools
  1. Share your story! Is there someone special in your life who offers you care and support? Are you proud to care for someone? Let us know!
  2. Find tons of resources on the TSF website, like care guidelines, inspiring stories, and more!
  3. Get some help with insurance assistance programs.
  4. Visit the TSF Map to find your state’s Facebook page. Like and follow to connect with other caregivers in your area.

Thank you to everyone caring for a loved one with Turner Syndrome! We appreciate everything you do!

As a special thank you, you’ll be the first to see the 2018 TSF Annual Report! The Report shares everything we’ve been up to this year with your support! Want to get on the list to see it first once it’s released? Complete this brief form and we’ll send it right to your inbox!

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